An Exploration of How [FND] Is Discussed on X (Twitter): Mixed Methods Study Using Social Network and Content Analysis 2025 McLoughlin et al

[Andy]

Authors: Caoimhe McLoughlin; Jing-Yi Wang ; Florence Do ; Takamichi Kanbayashi ; Anna Couturier ; Alan Carson ; Jon Stone

Abstract

Background:
Functional neurological disorder (FND) is one of the commonest conditions in neurological practice, describing symptoms like paralysis and seizures that can be severe and disabling. It is a diagnosis that is confirmed clinically rather than by scans or laboratory results. It is a stigmatized and widely misperceived condition, and since the emergence of long COVID, there has been some conflation of FND with other conditions, which has caused further misunderstanding. Social media has become increasingly popular for patients to learn and interact about their conditions, and the information that they seek and receive may be shaped by many factors. Prior to this study, the online discourse about FND had not been described in the literature.

Objective:
We aimed to analyze and describe how FND is discussed on the social media platform X (formerly known as Twitter) using a mixed methods approach.

Methods:
Using search terms related to FND, the authors collected data from 426 users and 1104 posts, generating a total of 7640 replies and reposts over a 2-month time frame in 2024. Quantitative descriptive and social network analyses were carried out to map key influential users and communities, in addition to measuring the influence of users. Content analysis was undertaken to describe the prevalent topics being discussed.

Results:
More users overall associated with conditions outside FND (n=180, 42.3%), mostly long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, compared with FND (n=148, 34.7%). Self-declared patients made up 40.8% (450/1104) of posts and 36.4% (n=155) of users. Social network analysis revealed 2 separate communities with little interaction. There was a prominence of myalgic encephalomyelitis/chronic fatigue syndrome and long COVID–associated users (nodes) over FND users (nodes). The former cluster showed stronger connections outwardly or peripherally than the FND cluster, suggesting that they may have a stronger impact on shaping the public narrative around FND than FND nodes. In total, 7 of the top 10 most influential users often displayed anti-FND views, while FND organizations and professionals had much less influence. There were 58 posts with at least 5000 views. Of these 58, 10 were from self-declared FND professionals, while 19 were from self-declared professionals associated with other conditions. Of these highly viewed posts, 38 of 58 were negatively predisposed toward FND. Content analysis showed themes of (1) conflict, (2) deception, (3) mistreatment and harm, (4) symptom experience, (5) knowledge, and (6) support.

Conclusions:
A large proportion of the discourse around FND on X is shaped by users who are dismissive of the concept of FND and those associated with it. These findings have implications for individuals getting support for a condition that is already widely misunderstood. This study could provide a template for assessing how other stigmatized conditions are perceived on the web.

Open access

 

[Hutan]

Quantitative descriptive and social network analyses were carried out to map key influential users and communities, in addition to measuring the influence of users. Content analysis was undertaken to describe the prevalent topics being discussed.

Scientific research this is not. But, the FND lobby is almost military in its detailed approach to intelligence gathering and propaganda production. I note Carson and Stone in the author list. I find it a bit concerning that they are doing network mapping of influencers. Who is funding this stuff?

since the emergence of long COVID, there has been some conflation of FND with other conditions, which has caused further misunderstanding

That was an interesting comment. Is it too much to hope that they are suggesting a retreat from the conflation of ME/CFS with FND? I haven't read the paper.

In total, 7 of the top 10 most influential users often displayed anti-FND views, while FND organizations and professionals had much less influence.
.... A large proportion of the discourse around FND on X is shaped by users who are dismissive of the concept of FND and those associated with it.

The poor lambs. You can hear in that abstract these FND professionals agonising over why they aren't feted by grateful patients as the clever people that they know they are.

Perhaps they aren't getting much traction on X, but FND professionals have dominated the narrative for decades. Their view predominates in most medical settings. Their future is secure for many years to come.

 

[BrightCandle]

I remember quite a lot of this discussion and most of it was all about misdiagnosis of Long Covid and ME/CFS patients with FND. There seem to be a push from the healthcare systems, especially the UK, to start to diagnose patients with FND instead of LC or ME and there were a lot of people complaining about that happening or not really knowing what had just happened to them.

I don't recall there being the sort of depth where there was an understanding of the issue associated with the criteria for the condition and the ever widening criteria and the house of cards of study papers that were all repeating the same inaccuracies but that wasn't really the problem. The posters were responding to a lot of people receiving misdiagnoses, sometimes replacing many year long diagnoses of ME/CFS.

But then looking into the paper there is the FND group who do identify with having that disease and the other diseases groups and they really were mostly not interacting all that much but posting on the same topic.

 

[Utsikt]

This feels like watching CIA’s clandestine psyopses play out in slow motion. They are mapping out their adversaries and teaching others how to most efficiently gaslight the public.

 

[Hoopoe]

It is unnecessary to discuss FND in relation to ME/CFS. Doing so only gives the impression that FND is somehow relevant to ME/CFS. I know these discussions happen only because Stone, Carson and a few others are trying to connect FND and ME/CFS but it should be fairly obvious to anyone that they are merely revealing their ignorance.

Let's stop giving attention and energy to the bizarre views of a few people who don't even have influence.

 

[rvallee]

I have no idea why physicians who can barely do medicine think they can do social media analysis. This is not a serious analysis, it's people with a bad harmful idea who can't face reality and try to make themselves think better about themselves.

They don't even understand the concepts happening here, let alone the social dynamics. They mostly do tone/style analysis, not content, but they don't have any relevant skills to do that, so it comes out as amateur, but then again so is their "day job" work, so whatever.

And ironically they find that they have no actual community of patients, only astroturfing 'influencers', but they can't understand what this means for them. They keep being told their work is awful and that they should pound sand elsewhere, but they're somehow allowed to keep polluting our lives.

They obviously cherry-picked to have more favourable data, and still they come off awful, but they can't process that because it doesn't even matter. Their work is intended for other physicians and has nothing to do with the patients themselves, so they don't care about it. They view total rejection of consent, on a rational basis with terrible outcomes as a result no less, as a challenge to overcome, not an ethical line that must be respected.

And they see it this way because they are allowed to by failed systems that clearly don't actually value things like ethics, respect and even evidence when they expose ignorance. Very creepy and predatory behaviour, but it's popular so chalk it up to "it was just how it was done at the time", except the time is now, when we do know and can do better.

 

[Utsikt]

I have no idea why physicians who can barely do medicine think they can do social media analysis. This is not a serious analysis, it's people with a bad harmful idea who can't face reality and try to make themselves think better about themselves.

They don't even understand the concepts happening here, let alone the social dynamics. They mostly do tone/style analysis, not content, but they don't have any relevant skills to do that, so it comes out as amateur, but then again so is their "day job" work, so whatever.

And ironically they find that they have no actual community of patients, only astroturfing 'influencers', but they can't understand what this means for them. They keep being told their work is awful and that they should pound sand elsewhere, but they're somehow allowed to keep polluting our lives.

They obviously cherry-picked to have more favourable data, and still they come off awful, but they can't process that because it doesn't even matter. Their work is intended for other physicians and has nothing to do with the patients themselves, so they don't care about it.

I suspect this paper was written so they can say «look at how much misinformation we’re up against. We need more funding so we can combat this.»

 

[Peter T]

It is unnecessary to discuss FND in relation to ME/CFS. Doing so only gives the impression that FND is somehow relevant to ME/CFS. I know these discussions happen only because Stone, Carson and a few others are trying to connect FND and ME/CFS but it should be fairly obvious to anyone that they are merely revealing their ignorance.

Let's stop giving attention and energy to the bizarre views of a few people who don't even have influence.

I have no idea of the scale of the issue, but know of one person at least diagnosed with FND and told by the consultant that it was synonymous with ME/CFS.

 

[Andy]

It is unnecessary to discuss FND in relation to ME/CFS. Doing so only gives the impression that FND is somehow relevant to ME/CFS. I know these discussions happen only because Stone, Carson and a few others are trying to connect FND and ME/CFS but it should be fairly obvious to anyone that they are merely revealing their ignorance.

Let's stop giving attention and energy to the bizarre views of a few people who don't even have influence.

I wish it worked that way. If collectively we don't continue to point out the attempts to draw ME/CFS into the functional/FND/psychosomatic fever dream then there will be no opposition to their voice. It should be obvious that there is no connection but to many it isn't.

 

[Utsikt]

Just take a look at Sweden and Norway where they are currently working to make everything, including ME/CFS into functional disorders.

 

[rvallee]

Content analysis showed themes of (1) conflict, (2) deception, (3) mistreatment and harm, (4) symptom experience, (5) knowledge, and (6) support.

Simply amazing that they can read this about themselves and think nothing of it. They can't possibly not understand that they are the source of this, that they are the conflict, but here they are, still trying the same thing that has failed for over a century, the same way, with the same intent, for all the same reasons.

Top 10 most influential users by degree centrality, discussing functional neurological disorder (FND) on “X” during a 2-month period in 2024 with more than 200 views

Clearly a hot topic. But then again illness advocacy has basically disappeared from twitter since the takeover, so it's funny that they are not aware of this. It's become very obvious that such advocacy is mostly pointless. Then again they aren't aware of much so it tracks.

Of these highly viewed posts, 38 were negatively predisposed toward FND, for example: FND isn’t a true diagnostic entity. It’s really just another way of accusing that individual of an illness that’s all in their head, though certain people claim there might be a biomedical cause.

That's just what it is. This is not being predisposed against, it's objecting to what is clearly harmful mistreatment based on delusional fairy tales, but they can't handle that because they do what they do for themselves, and it makes no difference what their victims think.

So this is the exact same split we see in all chronic illness, copy-and-pasted yet again with Long Covid. Most patients testify to harmful negligence, most professionals involved in the harmful negligence think it's all good. Two mutually exclusive realities, only one of which counts. About something that can only be defined as subjective experience. If things weren't absurd enough.

The FND-associated group was described often in forceful terms, such as the “enemy,” “zealots,” and “bullies.” FND-associated clinicians were described as rampant and territory-seeking, FND was depicted as a “weapon” to “hijack” other illness groups, and people with FND were held “hostage” by their “aggressors” (FND professionals). The FND diagnosis was often described as something “done” to the patient—it was “slapped on” and “thrown around,” an unwieldy process with “no safeguards.” Self-declared professionals associated with long COVID or ME/CFS often contested the validity of FND, and patients from other illness groups described how they opposed their FND diagnosis.

The subthemes were (1) not real and pseudoscience, (2) rebranded hysteria, (3) gaslighting, and (4) credibility and fraud. A striking theme was the perception that the patient community was being deceived—“tricked” in some way by FND professionals. The term “pseudoscience” was used frequently by several users to describe FND, and that clinicians who practiced in the field should be legally barred from doing so.

Holy hell I simply cannot conceive of being accurately perceived this way and continuing ahead with all the bullying anyway. Peak banality of evil.

Some of this seemed to stem from historical aspects and was driven by misperceptions of how modern-day FND is understood, which is also a finding in the literature

They keep insulting our intelligence while pretending they don't understand why they are hated. Amazing.

 

[Yann04]

people who don't even have influence.

I wish that were true. I myself was told I having FND while having severe ME/CFS and referred to Jon Stone’s website in a completely different country than the UK. Told that it explained my ME/CFS and prescribed GET/CBT (And mistreated probably the worst I’ve ever been medically in that appointment).

And quick searches on ME/CFS social media show that I am far from the only one. This is already a far reaching problem.

 

[Yann04]

I suspect this paper was written so they can say «look at how much misinformation we’re up against. We need more funding so we can combat this.»

Ironic they used X/Twitter given that’s known for misinformation anyways.

 

[Hutan]

I couldn't find a declaration of funding for this specific study.

There is this on Conflicts of Interest though

CM receives funding from the EU Horizon 2020 Marie Curie Sklodowska program (grant 956673). CM and TK are part of a functional neurological disorder (FND) research group at the University of Edinburgh. JS and A Carson colead an FND research group. They cofounded and hold executive roles in the FND Society and work with FND patient organizations.

JS and A Carson both post about FND on X. JS and A Carson carry out expert witness work, including for people with FND. JS has support from the Chief Scientist Office, Scotland, outside the submitted work. He runs a free self-help website for patients with FND. The other authors have no conflicts of interest to declare.

It could be worth writing to the EU Horizon Marie Curie Sklodowska program. It's a E6.6 billion fund to support researchers to develop their careers. It's a sad irony that the bad effects of the FND promoters, which tend to disproportionately harm women, are supported by a fund bearing Marie Curie's name.

The EU Horizon Marie Curie Sklowowska program supposedly

• Promotes excellence: Funds bottom-up research based on scientific excellence

 

[Hutan]

Who is funding this stuff?

CM receives funding from the EU Horizon 2020 Marie Curie Sklodowska program (grant 956673).

Grant 956673 was for a project called "Encompassing Training in fUnctional Disorders across Europe". The project aimed to train researchers in the field of functional disorders across Europe.

That lower case 'f' and upper case 'U' is not a typo, I guess it is done so the project can be called ETUDE. It just makes me think of 'f*** you'.

Encompassing Training in fUnctional Disorders across Europe | ETUDE | Project | Fact Sheet | H2020 | CORDIS | European Commission

Functional Disorders (FD) are clusters of chronic somatic symptoms that currently cannot be associated to reproducibly observable pathophysiological mechanisms. FD can affect every organ system, individuals of all ages, ethnic groups and socioeconomic strata, although the risk...

cordis.europa.eu

Project description
A new era in functional disorders research

"Functional disorders (FD) comprise conditions with chronic somatic symptoms that cannot however be associated with specific pathophysiological mechanisms. Although FD affect nearly 7 % of the population, imposing a high socioeconomic burden, the way different medical specialities conceive these disorders leads to fragmented and insufficient health care for patients.

The EU-funded ETUDE project aims to address this problem by offering a sustainable and structured training programme to early-stage researchers. By educating the new generation of scientists to work across disciplines, the project will provide the skills to develop products and services that improve care for FD patients."

Note how functional disorders are defined as 'chronic somatic symptoms that cannot however be associated with specific pathophysiological mechanisms'. There's no qualification of 'have not yet been associated', or even a more neutral 'have not been associated'. These people are utterly confident that the symptoms cannot and never will be associated* with pathophysiological mechanisms.

*Apart from those mechanisms discussed in the functional disease papers where presumably the sufferers have thought their way to a pathophysiological mechanism.

Funded under

• EXCELLENT SCIENCE - Marie Skłodowska-Curie Actions

Five years of funding ending in January 2025, totalling € 4 067 173,08

Imagine if that funding had been directed to early stage biologically focussed researchers working on ME/CFS instead of producing more researchers in Carson and Stone's image. How do we make the institutions supporting Carson and Stone's empire actually look at the nonsense that their funding is buying?

 

[Yann04]

EXCELLENT SCIENCE

Lmao

The system really has a functional disorder doesn’t it.

 

[Andy]

Thread on ETUDE here

Thread 'ETUDE: Encompassing Training in fUnctional Disorders across Europe'

Jul 22, 2020

Dutch study on functional complaints (including CFS) receives €4 million in European funding

"Some people particularly benefit from physical therapy, while others are more in need of support from a psychologist."


https://www.dvhn.nl/groningen/Als-de-dokter-niks-kan-vinden-25856002.html
https://www.twitlonger.com/show/n_1srb6c3

Online translation:

Two out of three patients cannot be diagnosed at the outpatient clinic for internal medicine at the UMCG
Inki the Younger • Today, 05:25 • Groningen
Share this article

Judith Roosmalen (right) and Marina de...

• Dolphin
• 2020 europe functional funding me/cfs netherlands
• Replies: 27
• Forum: Psychosomatic news - ME/CFS and Long Covid

• 

 

[Sean]

Simply amazing that they can read this about themselves and think nothing of it. They can't possibly not understand that they are the source of this, that they are the conflict, but here they are, still trying the same thing that has failed for over a century, the same way, with the same intent, for all the same reasons.

Hard to get somebody to understand something when their income, reputation, status, ego, etc, depend on them not understanding it.

The FND-associated group was described often in forceful terms, such as the “enemy,” “zealots,” and “bullies.” FND-associated clinicians were described as rampant and territory-seeking, FND was depicted as a “weapon” to “hijack” other illness groups, and people with FND were held “hostage” by their “aggressors” (FND professionals). The FND diagnosis was often described as something “done” to the patient—it was “slapped on” and “thrown around,” an unwieldy process with “no safeguards.” Self-declared professionals associated with long COVID or ME/CFS often contested the validity of FND, and patients from other illness groups described how they opposed their FND diagnosis.

Yes, because the one thing it cannot possibly be is true. So let's make sure that very real possibility is never allowed on the table for serious discussion.

And "self-declared" professionals is such a clumsy piece of propaganda it is laughable.

The subthemes were (2) rebranded hysteria,...

Er, because that is what it is.

You FND guys were openly celebrating a while back for successfully getting hysteria, conversion disorder, etc, rebranded with the FND label in the DSM. You were explicit about it. One of your great successes.

Functional neurological disorder (FND) is one of the commonest conditions in neurological practice,

You insist on repeating this lie, and its corollary about how much it costs society, in the first line or two of every abstract in your 'studies' and marketing screeds, and then get outraged when you are quite rightly called out on it. e.g.

Although FD affect nearly 7 % of the population, imposing a high socioeconomic burden,​

Everything they have said/claimed here and tried to portray as irrational resistance could be adequately explained by them being wrong and doing real harm to patients.

I think this 'study' actually shows how much effect informed legitimate resistance is having on their power grab and egos. They are feeling the heat. And listen to them squeal.

Good. Needs to be more of it. Much more.

 

[dave30th]

"self-declared" professionals

I wondered if I was included in this category.

 

[ScoutB]

Everyone's already made the important points about this study. A funny subtle distinction I'll just note is that they say

It is a stigmatized and widely misperceived condition ... This study could provide a template for assessing how other stigmatized conditions are perceived on the web.

Usually when people say a condition is stigmatized they mean the patients or that *having it* is stigmatized, here though it seems like they're complaining their diagnostic category itself is stigmatized lol