Saskatoon woman starts organization for neurological disorder support

https://fed.brid.gy/r/https://globalnews.ca/news/11740163/saskatoon-woman-starts-organization-neurological-disorder-support/

Carmarthen mum taking on Machu Picchu trek in memory of son who died aged two

Sian Milligan, 44, will take on the 11‑day trek through the Peruvian jungle next year alongside her mum, Sylvia Wallace. The pair are raising money for Tŷ Hafan, the children’s hospice that supported their family through the life and death of Sian’s son, Aled.

Sian lives with Functional Neurological Disorder and now needs specialist splints just to walk comfortably. But she’s been training after work, clocking up eight or nine miles at a time.

She said the trek is a personal mission — and a tribute to the little boy who fought every day of his short life.

‘Aled fought so hard to enjoy his life’

Aled was diagnosed with Down’s syndrome and multiple holes in his heart before birth. He later became only the second child in Carmarthenshire ever to be home‑ventilated.

Despite everything, Sian says he was “exceedingly cheeky”, loved music and sensory play, and communicated through sign language.

He died on 13 April 2009, aged just two and a half, after a virus he couldn’t fight off.

Sian said Tŷ Hafan became a lifeline during Aled’s illness — and after his death.

“Tŷ Hafan were wonderful with our Aled. It was a place where I could just be his mum, not his nurse. He loved the sensory room, the rocking chair, the music. Kyle was only four when we lost Aled and the support they gave him was exceptional.”

Her daughter Rhiannon was born three months after Aled died. Both she and Kyle have continued to attend Tŷ Hafan sibling groups over the years.

‘Walking up Machu Picchu is nothing compared to what my boys went through’

Sian says the trek is the toughest physical challenge she has ever faced — but it still doesn’t compare to what her sons endured.

“We can’t train for the altitude, so it’s all about stamina. But walking up Machu Picchu is nothing to what both my boys went through.”

Sylvia, who will be 71 when she takes on the trek, is also determined to complete what she calls her “last big walk”.

The pair will join other fundraisers on the charity challenge in 2027.

‘No family should have to face this alone’

James Davies‑Hale, Head of Fundraising for Tŷ Hafan, said the charity was grateful to Sian and Sylvia for sharing their story.

“When a child’s life will be short, no family should have to live it on their own. This trek will help us support more families through their child’s life, death and beyond.”

More information about the Machu Picchu trek is available via Tŷ Hafan.

Day 18 of the gin advent calendar. A near-perfect 9.5/10 and a rare moment of agreement with MrsVark.

The blog post also has a few choice words about Functional Neurological Disorder (FND), the bastard thief making MrsVark's life hell. It's cruel to have your own thoughts held hostage by a faulty connection between brain and mouth. FND can fucking do one.

https://theaardvark.co.uk/gin-advent-calendar-day-18-a-near-perfect-gin-and-a-rant-about-fnd.html

#GinAdventCalendar #Gin #FND #FunctionalNeurologicalDisorder #ChronicIllness #FNDAwareness

Study Finds Signs of “Functional Limb Weakness” in Patients Not Reporting Actual Limb Weakness

By David Tuller, DrPH

A recently published study about functional neurological disorder (FND) has reported some perplexing data. Of almost 300 patients diagnosed with Long Covid, 100 were identified as demonstrating one or more “positive signs” for “functional limb weakness,” a form of FND. Yet only 14 of those 100 patients reported experiencing limb weakness in the first place; the other 84 did not.

Hm. What does it mean to identify positive signs of functional limb weakness in the absence of reported limb weakness? Who knows? Certainly the investigators themselves make no credible attempt to explain this conundrum.

The study—“Contemporary positive signs of functional limb weakness in post-acute sequelae of SARS-CoV-2: an exploratory analysis of their utility in diagnosis and follow-up”–was published in June by BMJ Neurology Open, a major joural. It is retrospective, with data drawn from the medical records of Long Covid patients who attended a neurology clinic in Tokyo, Japan, from 2021 to 2014. At the clinic, they received comprehensive neurological exams, including testing for positive signs for functional limb weakness. (According to current practice, FND diagnoses require affirmative clinical indications, often referred to as “positive signs” or “rule-in signs,” such as intact reflexes in a limb said to be weak or paralyzed, that are purportedly incompatible with known pathophysiological processes.)

During the exams, the neurologists tested for functional limb weakness using six different signs, described in detail in a supplementary file. Apparently, the discrepancy between the number of patients found to have these positive signs and the much smaller number who actually reported limb weakness during these exams did not raise any particular concerns among the investigators.

Instead, they seem to have assumed that positive signs for functional limb weakness in people with Long COVID indicate cases of FND–even in the absence of evidence that patients are experiencing the relevant symptom. The investigators then suggest that these alleged cases of FND are likely implicated in generating and/or perpetuating Long Covid symptoms like fatigue and headache. “Some of the most common neurological symptoms of long COVID may be caused by FND,” they conclude.

Given that five in six of those with positive signs of functional limb weakness did not report limb weakness, this line of argument is kind of bonkers. The most urgent question arising from this study is: Do these signs mean anything at all? (Several of the signs have long been used in neurology; a couple of them were much more recently identified. As I have previously discussed, the evidence for the overall accuracy of these various signs is shaky.)

I suppose it is possible that some patients in the study might not have been that specific and might have referred to limb weakness as “fatigue.” But it seems highly unlikely this would have occurred in 84 out of 100 cases. After all, these patients underwent comprehensive neurological exams that included tests for functional limb weakness. Presumably, the neurologists conducting these exams asked questions that would have, or should have, elicited an accurate accounting of a distinctive symptom like limb weakness.

FND is the current name for the psychiatric condition formerly called conversion disorder, in which psychological distress was said to have been “converted” into physical symptoms. Experts in the FND field assert categorically that is a “brain network” disorder, but that is a theory, not a fact. The reality is that the etiology and pathophysiological processes causing the symptoms remain unknown. What is clear is that people with FND suffer from extremely distressing and disabling symptoms that resist easy explanation. Those with the condition are ill-served by research that fails to abide by basic rules of scientific reasoning.

My UC Berkeley colleague, infectious disease physician and professor emeritus John Swartzberg, shared my low opinion of this piece of work. That this deeply flawed paper passed through a BMJ journal’s peer review process, he said, was “very disappointing.”

The paper is marred by sentences like this: “Assuming that patients with positive signs had FND, the prevalence of FND coexisting with long COVID is likely to not depend on which variant of COVID patients were infected with but solely on the number of patients infected with COVID-19, as observed in this study.” Since those with positive signs of functional limb weakness were much more likely not to have reported any limb weakness than to have reported it, the assumption that “patients with positive signs had FND” is hard to justify. And any further claims built on that unjustifiable assumption cannot be taken seriously.

And there are passages in which, given the uninterpretable results on the positive signs, the argument reads like a parody:

“In summary, our study showed that long COVID, accompanied by positive signs, is not rare and that this phenomenon indicates the possibility of the coexistence of long COVID and FND. Therefore, some patients with long COVID may present with symptoms of FND. If positive signs are observed in long COVID patients, they are a useful indicator of the coexistence of FND in those with long COVID.”

The paper is a house of cards built on unwarranted assertions and pirouettes of logic. (I’ve addressed a core concern in this post but not the only one.) In any event, BMJ journals have not distinguished themselves when it comes to ME/CFS and Long COVID. This latest problematic publication is not remotely surprising.

(View the original post at virology.ws)

#FND #functionalNeurologicalDisorder #LongCovid

Null Results in Physiotherapy Trial for Functional Motor Disorder

By David Tuller, DrPH

*This is a crowdfunding month at University of California, Berkeley. If you appreciate my work and would like to make a donation (tax-deductible to US taxpayers) to the university in support of my position, here’s the link: https://crowdfund.berkeley.edu/project/46120

It must be tough for investigators when a major study seeking to assess the effectiveness of an intervention for a challenging condition yields null results. That’s what happened in 2019 with a trial of rituximab for ME/CFS, published in Annals of Internal Medicine. Findings from earlier research had suggested that rituximab, a drug used to treat autoimmune diseases, might have an impact on ME/CFS. However, the trial results did not support the hypothesis, forcing the investigators to revisit their notions about the mechanisms driving the disease.

Last year, a large trial for functional motor disorder (FMD), a subcategory of functional neurological disorder (FND), reported similarly disappointing news. In a paper in The Lancet Neurology, published in July, the investigators of the trial, nicknamed Physio4FMD, reported null results for specialized physiotherapy on the primary outcome–self-reported physical function at 12 months. While those who received the Physio4FMD intervention had slightly better scores on this measure than those who received treatment as usual (TAU), the results were neither statistically nor clinically significant.

(The lead author posted a thread about the findings here.)

In such cases, investigators are often in the somewhat thankless position of having to publish further analyses, trying to find some silver linings even though their intervention has already failed its most important test. Since last month, the Physio4FMD team has published two additional papers: a look at factors predicting outcomes, and a cost-effectiveness analysis. (I might get around to looking at those in a subsequent post.)

FND, formerly called conversion disorder, is the current term for a category of neurological symptoms that do not fall within established disease categories. The sub-group of functional motor disorder includes arm or leg weakness and paralysis, gait disorders, and the like. These conditions, whatever their cause, can be chronic, seriously disabling, and resistant to treatment. In the past, they were generally viewed as psychiatric conditions. In recent years, FND experts have categorized them as “brain network” disorders. In reality, their etiology remains unknown.

This is the second time in recent years that a high-profile FND treatment trial produced null results for its primary outcome. In 2020, the CODES trial for psychogenic non-epileptic or “dissociative” seizures, another subcategory of FND, reported that cognitive behavior therapy was no more effective than standard care in leading to seizure reduction at 12 months. In that case, FND experts argued after-the-fact that seizure reduction was the wrong primary outcome and that “quality-of-life” measures were more important.

Just as CODES was the largest trial of dissociative seizures, this new FND study–“Specialist physiotherapy for functional motor disorder in England and Scotland (Physio4FMD): a pragmatic, multicentre, phase 3 randomised controlled trial”–represented a first for the field. Noted the paper: “To the best of our knowledge, Physio4FMD is the first fully powered randomised controlled trial of a physical therapy-based intervention for functional motor disorder and is the largest randomised study of people with functional motor disorder published to date.”

The trial’s primary analysis included 241 participants from 11 hospitals in Scotland and England, with 138 assigned to the Physio4FMD intervention and 103 to TAU. The latter consisted of whatever treatment the participants received, or didn’t receive, after referral to the local National Health Service (NHS) neurological physiotherapy service. The intervention included nine sessions over three weeks, with a final session three months later. (Recruitment began in 2018 but was interrupted by the COVID-19 pandemic. The paper goes to substantial lengths to explain how the team addressed these challenging circumstances, including in the statistical analyses.)

As described in the paper, the Physio4FMD intervention sought to focus on the factors presumed to be driving the symptoms, such as paying excessive attention to symptoms, and had three broad goals: “to help patients understand their symptoms; to retrain movement with redirection of attention away from focusing on their body; and to develop self-­management skills.” The approach had undergone extensive development in the years before the trial. As noted, “the protocol builds on expert consensus recommendations for physiotherapy for functional motor disorder and was tested with promising outcomes in a prospective cohort study and a randomised feasibility study.”

The trial was unblinded and relied on subjective outcomes—a study design that generates an unknown amount of bias, for any number of reasons. In such cases, modestly positive findings are as likely to reflect the bias inherent in the design as any genuine impact of the intervention.

**********

Poor results on the primary outcome

In any event, the intervention did not produce the expected results. The primary outcome, the SF-36, is a frequently used measure for self-reported physical function. As described in the paper, it “includes ten questions for participants to self-­rate their degree of limitation when attempting vigorous activities (eg, running or lifting heavy objects), moderate activities (eg, moving a table or pushing a vacuum cleaner), carrying groceries, climbing stairs, walking various distances, washing, and dressing.”

Scores on the SF-36 range from 0 to 100. Higher scores represent better physical function. A score of 65 or below, for example, was considered disabled enough to be able to enter the PACE trial, which purported to prove that psycho-behavioral interventions could cure ME/CFS. In the Physio4FMD trial, the average scores at baseline were 26 and 31, respectively, for the intervention and TAU groups. That is very, very disabled. At 12 months, both groups averaged just over 37—still very, very disabled.

Besides not being statistically significant, the mean difference between the two groups at 12 months on the SF-36 was also, at 3.5 points, below the threshold considered clinically significant. On the SF-36, the threshold for a difference to be considered clinically significant is 10 points.

Among the many secondary outcomes, the Physio4FMD intervention arm scored better than the TAU arm on an overall rating of symptom improvement and on treatment satisfaction. But many other secondary measures had null results. As the investigators noted in the limitations section, given the number of secondary outcomes, some might have been found to be statistically significant by chance, and the analysis did not include the extra tests designed to minimize this possibility.

The rating of symptom improvement, called the clinical global impression of improvement scale (CGI­-I), is much briefer than the SF-36. In the CGI-I, as the study explained, “participants rate their perception of improvement in answer to the question, ‘After physiotherapy, the problem with my movement is…’ with the responses either ‘much improved,’ ‘improved,’ ‘no change,’ ‘worse,’ or ‘much worse.’” The answers thus provide no indication of the respondent’s level of disability in relation to others—just in relation to their own prior subjective state.

Like the CGI-I, the SF-36 is self-reported and therefore subject to biases related to that status. Unlike the CGI-I, it covers a range of specific activities and requires the respondent to consider each one separately. With its 100-point scoring, the SF-36 allows for easy comparison of results with other populations. In the Physio4FMD study, no matter what participants reported on the CGI-I, they remained severely disabled overall, according to the primary outcome.

In summing up, the investigators concluded that,“taken together, the subjective improvements in symptom ratings along with the very high levels of satisfaction with treatment, suggest that specialist physiotherapy could be a valued and safe treatment option for some people with functional motor disorder.”

Suggesting that a treatment “could be” an option for “some” patients is not saying much. As for the reports on symptom improvement and treatment satisfaction, it shouldn’t be surprising that patients who receive care from compassionate clinicians are more likely to answer questionnaires positively than patients who don’t receive the same level of care. These responses should not therefore be interpreted to mean the intervention is effective–especially given the poor results for the more comprehensive and thorough assessment provided by the SF-36, the primary outcome.

The bottom line, per the SF-36 data, is that the patients in this trial remained extremely debilitated, whether they received the Physio4FMD intervention or physiotherapy at a local NHS service. That’s the take-home message here.

(View the original post at virology.ws)

#FND #functionalNeurologicalDisorder

Experience: ‘I woke up with a Welsh accent’ | Life and style | The Guardian
https://www.theguardian.com/lifeandstyle/article/2024/may/24/experience-i-woke-up-with-a-welsh-accent

#FunctionalNeurologicalDisorder
#FND
#ForeignAccentSyndrome

Annual check in with neurologist for #migraine & #FunctionalNeurologicalDisorder went well. No changes to meds or treatment, which is positive.

Grateful.

💜🧡

"Letter to Journal about Inflated Claims of FND Prevalence"

David Tuller DrPH continues to pursue and correct a false claim over-representing the prevalence of #FunctionalNeurologicalDisorder (#FND). The authors of a paper containing this claim in the journal NeuroImage: Clinical had agreed to correct it, but then changed their mind. The journal invited Tuller et al to instead write a letter which he shares in his article

https://shorturl.at/fkyLM