Protocol Feasibility randomised controlled trial of online group Acceptance and Commitment Therapy for Functional Cognitive Disorder (ACT4FCD) 2023 Poole et al

[Andy]

Introduction

Functional cognitive disorder (FCD) is seen increasingly in clinics commissioned to assess cognitive disorders. Patients report frequent cognitive, especially memory, failures. The diagnosis can be made clinically, and unnecessary investigations avoided. While there is some evidence that psychological treatments can be helpful, they are not routinely available. Therefore, we have developed a brief psychological intervention using the principles of acceptance and commitment therapy (ACT) that can be delivered in groups and online. We are conducting a feasibility study to assess whether the intervention can be delivered within a randomised controlled trial. We aim to study the feasibility of recruitment, willingness to be randomised to intervention or control condition, adherence to the intervention, completion of outcome measures and acceptability of treatment.

Methods and analysis

We aim to recruit 48 participants randomised 50:50 to either the ACT intervention and treatment as usual (TAU), or TAU alone. ACT will be provided to participants in the treatment arm following completion of baseline outcome measures. Completion of these outcome measures will be repeated at 8, 16 and 26 weeks. The measures will assess several domains including psychological flexibility, subjective cognitive symptoms, mood and anxiety, health-related quality of life and functioning, healthcare utilisation, and satisfaction with care and participant-rated improvement. Fifteen participants will be selected for in-depth qualitative interviews about their experiences of living with FCD and of the ACT intervention.

Open access, https://bmjopen.bmj.com/content/13/5/e072366

 

[Andy]

"Disturbance of attention is thought to be responsible for the symptoms,4 as with other functional neurological disorders,5 although the underlying pathophysiological mechanisms remain unknown."

Reference 4 is to A unifying theory for cognitive abnormalities in functional neurological disorders, fibromyalgia and chronic fatigue syndrome: systematic review, thread here A unifying theory for cognitive abnormalities in functional neurological disorders, Fibromyalgia and CFS (2018), Mark J Edwards et al.

 

[Arnie Pye]

Patients report frequent cognitive, especially memory, failures.

So, is that implying that patients with dementia in one of its many forms [Edit: for example] actually have "Functional Cognitive Disorder" and could have better memories if only they tried harder?

And "Acceptance and Commitment Therapy"? Always sounds to me like the therapist must be telling the patient they must go and "**** off and die" please, because "we aren't going to investigate your physical health, you waste of space".

 

[DokaGirl]

From the article: "The diagnosis can be made clinically, and unnecessary investigations avoided." This was arbitrarily decided decades ago to save governments money.

This decision despite abnormal results found on memory testing, MRIs, orthostatic challenges etc., that go back at least 3 decades.

No alarm bells ringing then, that increasing reports of cognitive dysfunction need more than counseling as treatment. It's just mass hysteria after all.

 

[DokaGirl]

Acceptance, or what I deem giving up, is the completely wrong way to deal with cognitive, and other health difficulties.

What if we gave up with every problem we encounter? What kind of world would we live in. If we still had a world that is.

 

[rvallee]

Patients report frequent cognitive, especially memory, failures

Literally so incapable of actually listening to patients that they fail to notice that it's failure of executive reasoning that is mostly reported. Memory problems, sure, but compared to being unable to reason it's a much more significant problem.

But they never listen. While they shout about how good they are at listening. Which may be why they are so bad at listening, because they're shouting all the time about how great and superior they are, while delivering completely incompetent copy-paste pseudoscientific nonsense.

It's the combination of extreme arrogance and pretty much being the most incompetent professionals to have ever existed that is grating. They are stuck in loops, obsessing over the same thoughts, as if magic could deliver them the answer. And so this is exactly why they are doing exactly that, projecting their own failure onto us.

 

[rvallee]

This study is funded by the NIHR Research for Patient Benefit (RfPB) Programme (NIHR202743) and supported by the NIHR Clinical Research Network.

The aim of the programme is to fund topics and research methodologies that increase the effectiveness of NHS services, provide value for money and benefit patients.

Research proposals should have a clear trajectory towards benefiting the health or wellbeing of patients and users of the NHS and social care services.

No, I really don't think this meets those criteria. But there's always funding for cheap pseudoscience, it seems. Good science? Boring, expensive. Cheap pseudoscience? Exciting, magical, whimsical, and extremely expensive.

 

[Peter T]

The diagnosis can be made clinically, and unnecessary investigations avoided.

Yet more of the very dangerous idea that functional disorders can be [diagnosed] on the basis of the clinicians’ biases in order to save time and money and presumably to avoid indulging these dreadful needy hypochondriacs.

How many more people will die of treatable conditions or waste scarce time and energy uninformed about underlying conditions that are untreatable because of this propoganda?

 

[Sid]

So basically telling you to come to terms with having crippling/disabling brain fog.

 

[rvallee]

So basically telling you to come to terms with having crippling/disabling brain fog.

If you can remember having done so.

Which... yeah. No.

I can't tell the difference between yesterday and 5 years ago. It's all a giant nightmarish blur of suffering. I have no connection to real life anymore. I have no connection at all to the life I had before. It's all gone. All of it. Every bit of it. Everything I agreed to yesterday is null and void for that reason. I don't even know if I'm a real person anymore, nothing is real.

But they don't know that. Because they're fake experts faking knowing things and they actually don't even care about anything that happens to us. Everyone is just doing their day job and nothing more.

 

[bobbler]

Literally so incapable of actually listening to patients that they fail to notice that it's failure of executive reasoning that is mostly reported. Memory problems, sure, but compared to being unable to reason it's a much more significant problem.

But they never listen. While they shout about how good they are at listening. Which may be why they are so bad at listening, because they're shouting all the time about how great and superior they are, while delivering completely incompetent copy-paste pseudoscientific nonsense.

It's the combination of extreme arrogance and pretty much being the most incompetent professionals to have ever existed that is grating. They are stuck in loops, obsessing over the same thoughts, as if magic could deliver them the answer. And so this is exactly why they are doing exactly that, projecting their own failure onto us.

I’d say reasoning is intact but it’s executive function/working memory vs load.

the classic issue is just to add in any multi tasking or multi sensory - which for us we might already have by virtue of our symptoms and environment that day.

but not if someone distracts me mid sentence with a question - which certain personalities who claim they can’t possibly understand the condition or hear to learn it but very quickly prey in on that one and use incessantly - well that blows me from being ‘ok’ to left debilitated and sounding like a prayt. So they get what they want they think. Me looking dumb and lesser instead of them being a narcissist who couldn’t resist pushing on the disability just to win a non-debate discussion.

anyway I can reason well and have capacity but doing calculations when already tired where you have to hold several things in your head and communicate

I just think it’s worth being very clear on terminology like this even if psychiatry seems to be moving to deliberately dumbing itself down and muddying this knowledge and important distinctions for whatever agenda. Like the above probably.

ps I suspect the issue is it’s under the wrong part of psychology: the one that only has its little repertoire of courses that are becoming less matched to the issue and more transdiagnostic based on bigotry from their and those they are selling it to’s own ideological led presumptions.

the issue itself should be being mapped by cognitive psychology and measured they can then at least show what/when it is worse to point at source of issues and indicate suggestions like such would for air traffic controllers doing shifts and needing to stay on form through them at the other end of the spectrum.

 

[Andy]

Randomised controlled feasibility trial of online group acceptance and commitment therapy for functional cognitive disorder, 2025, Edwards, Poole et al

Abstract

Background
Functional cognitive disorder is an increasingly recognised subtype of functional neurological disorder for which treatment options are currently limited. We have developed a brief online group acceptance and commitment therapy (ACT)-based intervention.

Aims
To assess the feasibility of conducting a randomised controlled trial of this intervention versus treatment as usual (TAU).

Method
The study was a parallel-group, single-blind randomised controlled trial, with participants recruited from cognitive neurology, neuropsychiatry and memory clinics in London. Participants were randomised into two groups: ACT + TAU or TAU alone. Feasibility was assessed on the basis of recruitment and retention rates, the acceptability of the intervention, and signal of efficacy on the primary outcome measure (Acceptance and Action Questionnaire II (AAQ-II)) score, although the study was not powered to demonstrate this statistically. Outcome measures were collected at baseline and at 2, 4 and 6 months post-intervention, including assessments of quality of life, memory, anxiety, depression and healthcare use.

Results
We randomised 44 participants, with a participation rate of 51.1% (95% CI 40.8–61.5%); 36% of referred participants declined involvement, but retention was high, with 81.8% of ACT participants attending at least four sessions, and 64.3% of ACT participants reported being ‘satisfied’ or ‘very satisfied’ compared with 0% in the TAU group. Psychological flexibility as measured using the AAQ-II showed a trend towards modest improvement in the ACT group at 6 months. Other measures (quality of life, mood, memory satisfaction) also demonstrated small to modest positive trends.

Conclusions
It has proven feasible to conduct a randomised controlled trial of ACT versus TAU.

Open access

 

[Andy]

Selected participant demographics

"b. Other comorbid conditions included anaemia, asthma, irritable bowel syndrome, long COVID-19, Ehlers–Danlos syndrome, tinnitus, dyslexia, glaucoma, psoriasis and colitis."

 

[Utsikt]

The intervention involved five 90-min structured sessions in total, delivered over an 8-week period. The initial four sessions were delivered weekly and included mindfulness exercises, psychoeducation, exercises to increase psychological flexibility and identification of value-based goals. Over the course of these four sessions, participants were supported to develop a personalised action plan for the weeks and months ahead. The final session, scheduled for 1 month after the fourth session, was used to help participants to identify and overcome barriers to realising their action plan.

 

[Utsikt]

Both GAD and Depression scores increased in the CAT group, and decreased in the TAU group.

CGI scores of ACT + TAU participants improved only modestly; however, this is perhaps not surprising, as ACT purposefully contrasts the suffering attributable to the condition itself to responses to it and aims to address only the latter. This perhaps explains the apparent dissociation between the satisfaction and subjective improvement scores. In keeping with this, the satisfaction of the ACT + TAU participants with their memory did improve, whereas their subjective memory function scores did not. By contrast, those in the TAU condition remained highly dissatisfied with their memory function.

This shows that the intervention doesn’t do anything for their memory. All it does is that it gets people to answer questions differently because they have been told that they have to accept that they have an impaired memory.

It feels a lot like telling people to stop complaining and demanding help.

There were some limitations to this study and its findings.

Being a feasibility trial, it was not designed or powered to identify any treatment effect of the ACT intervention.

Also, any differences between groups could reflect performance bias (as the groups were treated differently and unblinded to their intervention arm), differences between the groups at baseline (as the control group showed elevated levels of depression), randomness or some combination of these factors, among others.

The higher rate of antidepressant use in the TAU group reinforces the point that this may have been a more unwell group, and this could be reflected in the 6-month outcomes.

However, the imbalance between the two trial conditions in terms of PHQ-9 scores at the screening stage had disappeared by the time baseline measures were completed.

A larger trial would be better able to ensure equality at baseline between the two arms.

Furthermore, the participants were all unblinded to treatment, and those randomised to the TAU arm may have experienced greater frustration and hopelessness caused by being denied an active intervention for their symptoms, creating expectancies about outcome in both groups.

The completion rates for outcome measures in both groups dropped below 70% after 2 months, despite frequent reminders; this limited the interpretation of findings and might indicate that the measures were overly onerous to complete.

A future trial should revisit the question of which measures are necessary, with input from a PPI group.

I wonder why they did not suggest any objective testing of their memories?

It may also be necessary to increase awareness of FCD among memory clinic staff, as they are likely to mischaracterise patients with FCD as having mild cognitive impairment, Reference Schwilk, Klöppel, Schmidtke and Metternich1 a precursor of dementia. This misdiagnosis, however, is liable to exacerbate FCD symptoms and associated distress, as well as impeding access to potentially beneficial interventions. Engaging leaders in dementia research and clinical services and producing easy-to-access training materials could improve knowledge, and a large multicentre clinical trial will itself also enhance familiarity with the diagnosis.

They are definitely going after dementia.

 

[Arnie Pye]

"b. Other comorbid conditions included anaemia, asthma, irritable bowel syndrome, long COVID-19, Ehlers–Danlos syndrome, tinnitus, dyslexia, glaucoma, psoriasis and colitis."

Some of these conditions can be treated and possibly cured. Since that is the case how could any of the conditions like that be classified as "Functional". If someone has asthma - treat them. If someone is anaemic - treat them. If someone has glaucoma - treat them...

The consequences of not treating some of these conditions could be catastrophic for the patient.

From the quote in the post immediately above #15 :

It may also be necessary to increase awareness of FCD among memory clinic staff, as they are likely to mischaracterise patients with FCD as having mild cognitive impairment, Reference Schwilk, Klöppel, Schmidtke and Metternich1 a precursor of dementia.

This makes no sense to me. Are they trying to do away with "Mild Cognitive Impairment" as a diagnosis? In many people it can be improved with B vitamins. It seems to suggest that instead of Mild Cognitive Impairment being a useful warning to patients and their doctors that the patients might develop noticeable dementia in the near future, these researchers want to remove the warning bell and spring it on people out of the blue.

I find all this BPS stuff to be cruel.

 

[Eleanor]

Selected participant demographics

So only two out of the 44 participants had a diagnosis of FND, but they all had FCD which is a subtype of FND? (according to the authors)

 

[Utsikt]

So only two out of the 44 participants had a diagnosis of FND, but they all had FCD which is a subtype of FND? (according to the authors)

According to them, you have FCD if they say you have FCD. It’s very convenient for the people that want to get paid..

 

[rvallee]

We randomised 44 participants, with a participation rate of 51.1% (95% CI 40.8–61.5%); 36% of referred participants declined involvement, but retention was high, with 81.8% of ACT participants attending at least four sessions, and 64.3% of ACT participants reported being ‘satisfied’ or ‘very satisfied’ compared with 0% in the TAU group. Psychological flexibility as measured using the AAQ-II showed a trend towards modest improvement in the ACT group at 6 months. Other measures (quality of life, mood, memory satisfaction) also demonstrated small to modest positive trends.

This is pure exploitative grifting.

It's especially maddening seeing the destruction of science in the US, knowing that this exact kind of grifting will be elevated to replace it. It's custom-made reactionary pseudoscience.