Review Functional neurological disorder, physical activity and exercise: What we know and what we can learn from comorbid disorders 2024 Boylan et al

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Jul 3, 2024.

  1. Andy

    Andy Retired committee member

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    Full author list: Boylan, Dworetzky, Baslet, Polich, O’Neal, Reinsberger

    Highlights

    • Physical activity has not been studied in functional neurological disorder (FND).

    • Exercise has been used to successfully treat comorbid disorders of FND.

    • The autonomic nervous system (ANS) may mediate benefits of exercise.

    • Future research must study the patterns of ANS functioning in FND.
    Abstract

    Functional neurological disorder (FND) is a common neurologic disorder associated with many comorbid symptoms including fatigue, pain, headache, and orthostasis. These concurrent symptoms lead patients to accumulate multiple diagnoses comorbid with FND, including fibromyalgia, chronic fatigue syndrome, postural orthostatic tachycardia syndrome, persistent post-concussive symptoms, and chronic pain. The role of physical activity and exercise has not been evaluated in FND populations, though has been studied in certain comorbid conditions. In this traditional narrative literature review, we highlight some existing literature on physical activity in FND, then look to comorbid disorders to highlight the therapeutic potential of physical activity. We then consider abnormalities in the autonomic nervous system (ANS) as a potential pathophysiological explanation for symptoms in FND and comorbid disorders and postulate how physical activity and exercise may provide benefit via autonomic regulation.

    Open access, https://www.sciencedirect.com/science/article/pii/S258998642400039X
     
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  2. Andy

    Andy Retired committee member

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    "The recent controversies in chronic fatigue syndrome literature (discussed below) warrants investigation into any potential harm of physical activity and exercise in FBM. The most reported exercise-related adverse event is muscle pain, which as discussed is likely amplified given the prevalence of pain catastrophizing. The incidence of exercise-related adverse events is low, with no serious adverse events reported in clinical studies [31]. This indicates that the benefits of exercise in treating symptoms of FBM far outweigh any potential harm.

    All in all, multiple types of physical activity have demonstrated significant improvement for FBM symptoms. Patients do best when prescribed a regimen directly by their doctor, and these regimens should thoughtfully recognize the patient’s physical activity preferences and predominant symptoms in order to maximize benefit and adherence"
     
  3. Andy

    Andy Retired committee member

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    "Physical activity in chronic fatigue syndrome

    Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is an incompletely understood illness manifested by post-exertional fatigue, cognitive issues, sleep disturbances, and/or chronic pain. According to the Centers for Disease Control (CDC), CFS affects up to 2.5 million Americans [51]. Patients with CFS exhibit a 40 % reduction in activity as measured on natural history actigraphy [52]. Specialty clinics for CFS have reported that 84 % of patients over time develop at least one comorbid functional or psychiatric condition [17], [51], [52].

    The best available research on treatment for CFS comes from the 2011 Pacing, graded Activity, and Cognitive behavioral therapy (PACE) trial, a RCT that showed that individualized graded exercise therapy (GET) in conjunction with CBT was most effective at reducing fatigue and improving physical function after one year [53]. GET uses principals of starting with low-intensity activity and gradually increasing based on patient tolerance, as was shown to be effective in FBM. Since the 2011 trial, many other studies have shown that graded exercise therapy improves quality of life, ability to work, physical functioning, anxiety, and depression [54], [55]. Synthesis of the Physiotherapy Evidence Database (PEDro) showed that there is moderate evidence that exercise can improve fatigue, sleep, physical functioning, and overall health in patients with CFS who are well enough to attend an outpatient clinic, irrespective of type of exercise [51], [55].

    Importantly, the PACE trial showed that GET was more effective than adaptive pacing therapy (APT, or pacing). Pacing is promoted as an energy conservation strategy of restricting exposures to post-exertional malaise-inducing stimuli and reducing daily activities [51], [53]. In 2021, the United Kingdom’s National Institute for Health and Care Excellence (NICE) published new CFS treatment guidelines, which favors pacing over GET and CBT. FND and CFS experts have published their serious concerns with the new NICE guidelines, arguing that pacing may actually be harmful to CFS care [56], [57]. All in all, though it remains controversial in light of the new guidelines, the most effective and studied treatment for CFS appears to be GET and CBT, and their success in CFS should prompt application in patients with FND."
     
  4. Trish

    Trish Moderator Staff Member

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    The level of ignorance about ME/CFS is clear from their use of the term PEF instead of PEM, and describing it thus:
    And then of course supporting PACE and arguing against NICE.
     
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Wow. “Favours pacing over GET/CBT”. Nope that’s a misrepresentation. Unlike you lot it actually accepts that GET can cause harm. You prefer to rely on low/very low quality research.
     
  6. Trish

    Trish Moderator Staff Member

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    The authors are all at Brigham hospital, Boston.
    Out of curiosity I looked at what references they used for ME/CFS:

     
  7. Sean

    Sean Moderator Staff Member

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    In this traditional narrative literature review,

    Off to a bad start. (I am not a fan of narrative reviews at the best of times, traditional or otherwise. They are mostly just pseudo-scientific manifestos promoting the authors' ideological prejudices, in my humble opinion.)

    (Also, FBM is fibromyalgia.)

    The best available research on treatment for CFS comes from the 2011 Pacing, graded Activity, and Cognitive behavioral therapy (PACE) trial

    Of course, they start here. Because all roads in the pychosomatic/FND map of 'CFS' lead back to PACE. The rehabilitation project of PACE is gathering pace, zombie-like it must never be allowed to die.

    (Note their persistent use of CFS throughout this document, and the casual conflating of it, and all the other listed conditions, with FND. The whole paper also persistently and continuously conflates association with causation, or fails to distinguish between them.)

    a RCT

    PACE was denied controlled status, for good reason, one of the things the reviewers did get correct. The only mentions of controlled in PACE are in the citations it used.

    Besides, I thought the psychosomatic club now regard RCTs as passé, indeed inappropriate? Or is that only when they don't support their 'clinical experience'? Is it still a status to be desired, where convenient?

    showed that individualized graded exercise therapy (GET) in conjunction with CBT was most effective at reducing fatigue and improving physical function after one year

    Only by the post-hoc fiddle, and only on subjective measures, and even the PACE authors had to concede it didn't demonstrate any benefit over APT or SMC at the much more important 2.5 year long-term follow-up. The fact that the authors of this paper did not mention these two facts tells you everything you need to know about their competence, diligence, or integrity.

    Since the 2011 trial, many other studies have shown that graded exercise therapy improves quality of life, ability to work, physical functioning, anxiety, and depression [54], [55]. Synthesis of the Physiotherapy Evidence Database (PEDro) showed that there is moderate evidence that exercise can improve fatigue, sleep, physical functioning, and overall health in patients with CFS who are well enough to attend an outpatient clinic, irrespective of type of exercise [51], [55].

    News to me. Let me guess, all 'improvements' are on subjective self-report measures, with no support from objective measures, and vanish into thin air when examined robustly, or otherwise don't support the claim. [Checks citations: Yep, for 54, a Chalder paper. Have not seen 55 yet. For 51, read on:]

    Reference 51 does not support their claim. It in fact gives PACE, and the model on which it is based (i.e. more or less the same one being advocated in this paper), a good kicking. Even worse, it recommends pacing, not GET nor any other form of exercise therapy.

    Importantly, the PACE trial showed that GET was more effective than adaptive pacing therapy (APT, or pacing).

    No, it did not. See previous point about 2.5 year follow-up results. Furthermore, and critically, the version of pacing (APT) tested in PACE was not as understood and practiced by patients, and its results cannot be generalised.

    FND and CFS experts have published their serious concerns with the new NICE guidelines, arguing that pacing may actually be harmful to CFS care [56], [57].

    Which 'concerns' were comprehensively refuted by the NICE team. The authors also failed to cite NICE's refutation.

    All in all, though it remains controversial in light of the new guidelines,

    Only because some cannot accept the results of a robust independent assessment of their shoddy work, and insist on manufacturing a controversy where there should be none.

    the most effective and studied treatment for CFS appears to be GET and CBT, and their success in CFS should prompt application in patients with FND.

    And, of course, it recommends GET and CBT for everybody, with a nifty diagram to help visual the latest version of the psychosomatic fable – it's the autonomic nervous system wot dun it. No, really, we got it right this time.

    This article is the usual propaganda sludge. One of those that just gets worse the more you read it and check its citations. The amount of literature you have to wilfully ignore or misinterpret to make the claims it has is breathtaking. But not in the slightest bit surprising. Par for the course, I am afraid.

    Shame on the reviewers for passing it and the journal for publishing it.
     
    Last edited: Jul 4, 2024
  8. NelliePledge

    NelliePledge Moderator Staff Member

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    Traditional narrative…… Folk Tale? There’s a very pertinent one about an emperor
     
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Well that's just plain false. Literally starts with an obvious lie. And it does not get much better after that.
    Oh, lookie here, they know it's false. How can it not have been studied, but existing literature on it exist? The wonders of an entire scam discipline built on lies and nonsense. It makes a mockery of peer review when blatant contradictions pass through.

    The reasoning about exercise being good because it affects the ANS makes as much sense as saying that cocaine would be good for Parkinson's disease because it affects dopamine. That's not how any of this works.
    Oh, hey, also false. It's possibly the most recorded adverse event, but not the most reported. They're hinting at DOMS here, which is almost never a problem because exercise intensity never reaches that level. I've seen many comments from the fibromyalgia community, by far what they report the most is either PEM, something similar, or the fact that they simply don't have the energy to spare as they're already struggling with activities of daily living. They do report pain, but that's because, you know, it's literally how fibromyalgia is defined. It's kind of in the name.
    Also false. Damn they're really going at it with the lies here. It's actually very high, but most of those are not recorded, because they're not believed, and that's how lies become, well, recorded lies.
    It was a randomized trial, not a RCT. Damn this paper is a banger on making stuff up.
    And another one. It advises to increase even if it's not tolerated, since most patients don't tolerate it because of PEM. Of course the increase is paused for a bit if there are adverse reactions, but the goal is to always increase. Because it's based on two false premises of deconditioning and fear of whatever.
    And have not shown any evidence of that, in fact could not support any of their whines. If we take the very evidence they cite above, PACE, it showed no such thing. But who cares about what's true or false, this is biopsychosocial medicine!

    The thing where experts talk about things they obviously don't understand one bit is so freaking weird, it never ceases to amaze.
     
  10. Hutan

    Hutan Moderator Staff Member

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    It's all so thoroughly and demonstrably wrong.

    Does anyone know how to submit comments on the paper?
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    For some reason, this is published in "Epilepsy & Behavior report" for a special edition on "Advancing Physical Activity and Exercise Research in Epilepsy". With about the only barely relevant mention of epilepsy being "Benefits of physical activity in epilepsy have recently been studied at length, and include improved quality of life metrics and even decreased seizure frequency in some studies".

    I don't think it says as much as publishing in the Romanian journal of experiential research (IIRC), but it isn't far from that. This is just weird, but it follows the usual model of flooding the space with BS. Anywhere. Everywhere.
     
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  12. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    Haven't seen this sort of unbelievably blatant cherry-picking of references in the recent past all that much. But what stands out is how they cite 'Anomalies' while, yes, omitting NICE's response, but, more egregiously, not citing the actual guideline. Of course that might lead to someone actually looking at it, only to find that it's fairly contradictory to pretty much the entire ME/CFS section.

    It's one thing to not bother with the various prominent publications from the past decade or so that discredit PACE/BPS views, but not citing an official guideline (based on a review) you've called attention to by citing an (opinion) critique? I know this has never really mattered all that much in CFS research where BPS papers allow authors to get away with pretty much whatever they want, but at some point this sort of distortion has raise questions about medical ethics, considering it's published in something apparently classified as a scientific journal.

     
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  13. Sean

    Sean Moderator Staff Member

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    It is so blatant, isn't it. We are way past the point where they can claim plausible deniability. They are just compounding the already serious damage to their own reputations.
     

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