Recruiting: A Study of a Positive Emotion Intervention for the Treatment of Long COVID-19 Symptoms, University of California, Lopez

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Mar 28, 2023.

  1. Andy

    Andy Committee Member

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    SUMMARY
    This study is testing a new brief mindfulness practice for people suffering from long COVID-19 symptoms. People suffering from long COVID are particularly vulnerable to negative emotions, as they must also cope with the long-term uncertainty of physical and psychological stress beyond the acute infection. The goal of the study is to measure the ability of a brief mindfulness practice to promote a sense of well-being in people suffering from long COVID.

    .....

    DETAILS
    This is a pilot randomized waitlist-controlled clinical trial (RCT) testing a new brief self-care intervention for people suffering from post-acute sequelae SARS-CoV-2 infection (PASC). The overarching goal of this study is to establish the feasibility and early efficacy of microdosing mindfulness as a self-care intervention. The purpose of the intervention is to promote a sense of well-being among PASC patients who currently have limited access to other proven self-care modalities.

    Our research question is whether our newly developed training can assist PASC patients to self-microdose mindfulness (5-15 seconds activities in everyday life) and improve on perceived metrics of well-being (primary outcome). Our hypothesis is that self-microdosing mindfulness will evoke positive emotions that can improve well-being on patients suffering of PASC-related symptoms beyond 3 months post COVID-19 infection. If effective, an increased frequency of the mindfulness activity will then help buffer negative emotions (e.g., anger, loneliness, etc.) experienced during the pandemic and associated with ongoing stress and/or somatic symptoms.

    https://clinicaltrials.ucbraid.org/trial/NCT05676008
     
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Now girls and boys, who can spot the eleven mistakes in this protocol?
    Jaffa cakes will be distributed to all those providing the correct answers by Thursday (or at least virtual Jaffa cakes).

    I love the micro-dosing, as would Samuel Hahnemann stroking his harp in heaven.
     
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  3. Mij

    Mij Senior Member (Voting Rights)

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    Positive vibes homeopathy.
     
  4. Charles B.

    Charles B. Senior Member (Voting Rights)

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    Wouldn’t want to overdose on mindfulness. This stuff is so ridiculous and the inevitable consequence of a profession thinking this is all patients deserve
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    But maybe the micro-dosing potentiated the power. You might end up blowing your mind by self-dosing just one teeny time.
     
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  6. Trish

    Trish Moderator Staff Member

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    Surely this is a joke. I'm imagining a couple of clinicians in the pub betting each other they can get away with the most ridiculous study proposal.
     
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  7. Creekside

    Creekside Senior Member (Voting Rights)

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    Maybe they read their calendar wrong. It's not April 1 yet.
     
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  8. RedFox

    RedFox Senior Member (Voting Rights)

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    Maybe mindfulness cures the immune, neurological, metabolic or whatever dysfunction that causes long Covid. Perhaps it can regrow brain cells, erase tumors, restore sight to the blind and regrow lost limbs. Maybe we all just need to meditate for 15 minutes a day, and we'll become immortal and live forever.
     
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  9. bobbler

    bobbler Senior Member (Voting Rights)

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    What shocks me here is that these things really should - if they are 'new' and saying 'its worth a try, but does nothing, but might help' - be all about having to self-assess the potential for HARM. Or to be a waste of money, energy, key resources people have.

    The fact that none of these studies ever seems to note or know that these are people with little energy and all of the descriptions to be about adapting to their needs I find shocking.

    And no you don't get to assert 'vulnerable to negative emotions' onto people - how dare they, that is psychological harm to stick something onto people that will be used against them when it isn't accurate, proven or relevant. And toxic positivity isn't a catchphrase but a note about the misnomer ie inaccurate presumption that you can't do harm by telling people to 'be positive' instead of validating reality because it doesn't work for you. There isn't evidence that 'being positive' makes people happier, read the proper literature.

    Having a fake treatment shouldn't entitle you to write smack about people in a little manifesto claiming rubbish about them - they have a hard enough time as it is. Where is the requirement of respect and accuracy from these individuals?

    And yes I bet someone saying it straight would have that manipulative terminology being weaponised to instead of saying 'I don't like criticism' (people find it rude when it is fair) they twist what is an important and should be used responsibly area to wrongly use the term 'negative emotions' and gag people by belittling such feedback as 'hysterical woman' stylee and their perceptions or emotions talking.

    Sorry but when you read the language and attitude, as someone with a degree in psychology I can only think this is all about power. Not help. ANd a lot of passive-aggressive speak reducing the power of patients who might have this to say how they really feel.

    Being deluded by your own area and your sales spiel telling yourself what you like to do must be great for others doesn't provide you with an excuse to go around insulting and harming people. Sorry but it is time we are allowed to say it straightfowardly. Fake assertions of 'problems and causes they don't have' that aren't proven, do only serve to minimise their issues, cause miscommunication and misery with their supporters, and reduce respect and ability to be heard and validated. So are harmful and a real problem that is causing psychological, situational and health harms and it all needs to be tackled rather than this emperors new clothes of 'oh you claim you have good intentions', 'it's a mind thing' well then it can only be good psychology - what a croc if that's what they are telling themselves.
     
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  10. Trish

    Trish Moderator Staff Member

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    The researcher is listed as
    Javier E Lopez
    Title(s) Associate Professor, Internal Medicine
    School School of Medicine
    https://profiles.ucdavis.edu/javier.lopez
    Here's his research profile on his university's website. This study is not listed. All the other studies are serious biomedical studies.
    I am increasingly convinced this is a spoof.
     
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  11. Mij

    Mij Senior Member (Voting Rights)

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  12. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    The original purpose of ‘mindfulness’ from its two to three thousand year old roots was to develop insight into the world as it is. Great shame these researchers are not practicing mindfulness as originally intended.
     
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  13. rvallee

    rvallee Senior Member (Voting Rights)

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    No one doesn't have access to self-care. The self part is not some random label, despite the standards in BPS land. It means something.

    We've been seeing this weird trend where studies have supervised self-managed care, which has the downsides of both and no upsides because this is quackery. And they're talking about microdosing as if you can carry that meaning here. This is what pseudoscience is all about, it uses and borrows serious language to coat the BS they're marketing. And they use the credibility of medicine to market this junk.

    This is really high up on the index of "looks like a joke study to embarrass the paper". The standards in medicine are simply atrocious, very high ceiling but deep sub-basement bottom.
     
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  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Yeah!
     
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  15. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Denying people's reality again!

    This would be gaslighting.
     
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  16. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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  17. Barry

    Barry Senior Member (Voting Rights)

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    I'm trying to get my head around the validity of a waiting list control group, in a trial for a psychological intervention. I appreciate there may be ethical considerations for not using a no-treatment-at-all control group, but that would not magically validate some other form of control group if it is inherently invalid.

    So as a thought experiment (so we can set aside ethical issues for a moment), would a no-treatment-nor-expectation-of-treatment group would be a better control? It's unblinded of course, so patients know they are not being treated, but that will be true for all types of control group. Given the intervention is psychological, then presumably a control where participants' situations are the same, other than no intervention, is the best shot at a control? Being on a waiting list is psychologically quite different from that, so can it really be a control?

    Patients on a waiting list are in a very different, limbo-like psychological situation; anticipating treatment yet knowing they have to wait. A very different psychological situation to the no-treatment-nor-expectation-of-treatment control situation, with potentially all sorts of psychological curve balls into the mix. On the one hand elation that help might be on the way? On the other hand maybe despair that it's not happening and may never happen, and no knowing what is going to happen when it does. Conditions for a control group need to be as deterministic and best-matching as possible, yet I can't help wonder if this kind of control group is pretty indeterminate in terms of the psychological states it might foster, especially when the trial is all about psychological states of participants.
     
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  18. JemPD

    JemPD Senior Member (Voting Rights)

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    Apart from agreeing with every other post about this, my first thought was 'mindfulness is not about positive emotions' its certainly not about changing feelings. It actively agaisnt calling emotions negative or positive, thats the whole point!

    i read it about 20yrs ago, it was one of the best books i ever read. I highly recommend it.
     
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  19. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Within Buddhist meditation practice there are two threads, one looking at developing insight and the other about cultivating positive emotions. Some traditions focus on one or the other, but other traditions seek to maintain a balance between both practices. The normal mindfulness practices are very much in the insight side, about objective observation. When various Buddhist groups started looking at marketing Buddhism to western consumers mindfulness techniques came to the forefront because they were the easiest to present without eastern cultural and theological baggage.

    I find it disconcerting in that forty years ago I knew a number of clinical psychologists, who were also practicing Buddhists, exploring how to include various meditation techniques into their clinical practice. Then I looked away and suddenly mindfulness has become a universal panacea, with no reference to its origins. There are all sorts of potential issues arising from misuse of mindfulness without a skilled instructor with a good knowledge of their students.

    I am anecdotally aware of mindfulness associated with psychotic breaks, depression and suicide attempts. One risk of misapplied mindfulness in chronic illnesses might be to encourage hyper-vigilance of bodily symptoms. Though I do use (or perhaps misuse) mindfulness techniques to help cope with episodes of severe pain, to be aware all the time of how awful life is with a chronic illness is not necessarily going to promote either positive emotion or coping. (Anyone who has had to complete a PIP application will know how devastating and draining the accurate enumeration of our own limitations can be.)

    For some people in the right circumstances mindfulness can contribute significantly to their quality of life, but for others in the wrong circumstances it can be very negative. I suspect yet again we have a situation where if things go well it is chalked up to the wonderfulness of the teacher/practitioner but if things go badly there will be no recording of adverse events because the student/patient is blamed for not doing things properly.
     
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  20. JemPD

    JemPD Senior Member (Voting Rights)

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    I'm not a Buddhist & my exposure to mindfulness is through self compassion based trainers like Kristin Neff, & i find the practices of 'noting' really helpful (that might not be the correct term so by that i mean observing & being aware of what i notice and how i am feeling, without judging it.
    Naming something as positive or negative seems entirely contrary to that, and it feels like the practices i have come to love have been hijcked by the CBT/positive psychology brigade. I must be terribly frustrating to be a practicing Buddhist & have to watch while it gets used for trash like this study.

    I like a body scan, unless i am in PEM, but i'm a person who has trouble staying connected with my body i have a tendency to actively & automatically tune out 'youre over-doing it' type warning signs so i find it helpful for pacing, but it does make me laugh how one of the BPS things is that PwME are body watching & paying too much attention to bodily sensations & then they choose mindfulness to recommend.... its almost as if they're incompetent.

    As you say, sometimes the very last thing we need is to be fully aware.

    Its interesting to hear that there is a thread in Buddhist meditation practice that looks at cultivating positive emotions. I'd not been aware of that had assumed it was all a western/positive psychology hijack. Thanks for sharing.
     

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