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An online breathing and wellbeing programme (ENO Breathe) for people with persistent symptoms following COVID-19:.., 2022, Phillip et al

Discussion in 'Long Covid research' started by Andy, May 1, 2022.

  1. Andy

    Andy Committee Member

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    Full title: An online breathing and wellbeing programme (ENO Breathe) for people with persistent symptoms following COVID-19: a parallel-group, single-blind, randomised controlled trial

    Summary

    Background
    There are few evidence-based interventions for long COVID; however, holistic approaches supporting recovery are advocated. We assessed whether an online breathing and wellbeing programme improves health related quality-of-life (HRQoL) in people with persisting breathlessness following COVID-19.

    Methods
    We conducted a parallel-group, single-blind, randomised controlled trial in patients who had been referred from one of 51 UK-based collaborating long COVID clinics. Eligible participants were aged 18 years or older; were recovering from COVID-19 with ongoing breathlessness, with or without anxiety, at least 4 weeks after symptom onset; had internet access with an appropriate device; and were deemed clinically suitable for participation by one of the collaborating COVID-19 clinics. Following clinical assessment, potential participants were given a unique online portal code. Participants were randomly assigned (1:1) to either immediate participation in the English National Opera (ENO) Breathe programme or to usual care. Randomisation was done by the research team using computer-generated block randomisation lists, with block size 10. The researcher responsible for randomisation was masked to responses. Participants in the ENO Breathe group participated in a 6-week online breathing and wellbeing programme, developed for people with long COVID experiencing breathlessness, focusing on breathing retraining using singing techniques. Those in the deferred group received usual care until they exited the trial. The primary outcome, assessed in the intention-to-treat population, was change in HRQoL, assessed using the RAND 36-item short form survey instrument mental health composite (MHC) and physical health composite (PHC) scores. Secondary outcome measures were the chronic obstructive pulmonary disease assessment test score, visual analogue scales (VAS) for breathlessness, and scores on the dyspnoea-12, the generalised anxiety disorder 7-item scale, and the short form-6D. A thematic analysis exploring participant experience was also conducted using qualitative data from focus groups, survey responses, and email correspondence. This trial is registered with ClinicalTrials.gov, NCT04830033.

    Findings

    Between April 22 and May 25, 2021, 158 participants were recruited and randomly assigned. Of these, eight (5%) individuals were excluded and 150 participants were allocated to a treatment group (74 in the ENO Breathe group and 76 in the usual care group). Compared with usual care, ENO Breathe was associated with an improvement in MHC score (regression coefficient 2·42 [95% CI 0·03 to 4·80]; p=0·047), but not PHC score (0·60 [–1·33 to 2·52]; p=0·54). VAS for breathlessness (running) favoured ENO Breathe participation (−10·48 [–17·23 to –3·73]; p=0·0026). No other statistically significant between-group differences in secondary outcomes were observed. One minor self-limiting adverse event was reported by a participant in the ENO Breathe group who felt dizzy using a computer for extended periods. Thematic analysis of ENO Breathe participant experience identified three key themes: (1) improvements in symptoms; (2) feeling that the programme was complementary to standard care; and (3) the particular suitability of singing and music to address their needs.

    Interpretation

    Our findings suggest that an online breathing and wellbeing programme can improve the mental component of HRQoL and elements of breathlessness in people with persisting symptoms after COVID-19. Mind–body and music-based approaches, including practical, enjoyable, symptom-management techniques might have a role supporting recovery.

    Open access, https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(22)00125-4/fulltext
     
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  2. Trish

    Trish Moderator Staff Member

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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Oh boy. They literally take note that the patients are basically telling them "this is nice, I guess, but it's medically useless" and can't even process it. Saying it's complementary to medicine means exactly that. But a generation of alternative medicine thinking creeping into medicine has made this statement lose its meaning, since complementary now basically means the same as medicine, the thinking seems to be that it's who does it, rather than what.
    Oh, looky here, they basically say it twice. "This is nice and everything, I guess, but this isn't what I need". Apparently this gets interpreted as "this is just what we want!".

    The first paragraph says it all, they think they're "supporting recovery". As if the act of being there is all that's needed, it's unthinkable that thoughts and prayers can't possibly help just as well as actual medicine. That's frankly the best name for this ideology: thoughts-and-prayers-based medicine. Thoughts and prayers are nice, just not from professionals. The whole point of seeking professionals is that they can deal with the things that the patients can't do. But the easy stuff is all they can do.

    Like getting a "Wish this were food" card from a food program, with a glossy picture of people eating and a scribbled note that says "whish this were you". So helpful.
     
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  4. Wonko

    Wonko Senior Member (Voting Rights)

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    Of course..improving peoples sense of wellbeing is a good thing, or at least better than making it worse.

    It's been known for a long time that breathing exercises can make people 'feel' better, but, in most cases, not actually better.

    It's an 'illusion' and provided that is understood then that's okay - as the people will still have the same problems, breathing may make them feel a bit better about it, but still the same problems.

    It is not a 'treatment' as in a cure, or a plan to get cured.

    Something akin to going to see a GP and them giving you £10 (or even decent cake and a cup of tea) - would make some people feel 'better', but doesn't actually fix whatever you went in there for.

    Obviously there are exceptions, people who need to do breathing exercises to medically improve, in a medical type setting probably.

    But for most, changing how people feel only changes how they feel, it doesn't 'treat' them in an medical sense.

    Given that the effect breathing has on MH has been known for yonks, I am 'surprised to see not just this study, but the press coverage about it.

    Possibly it's just an advert for the English National Opera?
     
  5. cfsandmore

    cfsandmore Senior Member (Voting Rights)

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    There's a song, Sing All Our Cares Away. I wonder if it is evidence based? :whistle:

    I don't sing because that's a waste of energy. It's not that I don't want to, its that energy is precious. Over and over I've explained Energy Envelope to CBT therapists. Over and over they didn't get it. They begged for me to just "give it a try". Hearing is the great shortcoming in CBT therapists. Communicating with someone who hears but doesn't listen is flustering.
     
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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Bit of a funny thing about that. I'm a horrible singer. I have a good musical hear, but my vocal cords are, uh, let's say defective. I can hit most notes, they just sound terrible. I think they're actually somewhat broken in the middle, my voice breaks in mid-range. I'm better at making different sounds than normal voice range.

    I used to be a musician, used to listen to music all the time. Haven't been able to in years, and I miss it a lot. So recently, over the past few weeks, I've taken up to practicing a bit with humming. Completely coincidental to this program.

    My voice is better. Still sick, though. No impact on shortness of breath, none of this is better. If we make the primary outcome whether I feel good about it, sure, as long as it's a generic value that has nothing whatsoever to do with my health, rather how satisfied I am with humming.

    I mean, it's humming, what's there so dislike? Especially as musician. I wasn't the creative part of the band but I composed a lot of music in my past. So this is an outlet for me to keep this a bit alive. And my voice sounds better. I'm working on my "radio voice", sounding good to the ear.

    Still sick, though. Zero impact on anything health-related. But a bad assessment could easily conclude, if questions are ambiguous and avoid asking specifically about health, that this is helpful. As long as the target is unrelated to the actual issue.

    Now here's the kicker: I will keep doing that. As long as I enjoy it. Because I enjoy it. That's another way it could be argued as "helping". Why would someone continue a treatment unless it helps? Well, if the "treatment" is actually enjoyable in itself, unrelated to health issues. And not even an actual treatment anyway.

    That's one consequence of using a sham treatment that is in itself enjoyable or useful for other purposes: continued use can easily be argued as being useful for the stated purpose, even though it explicitly isn't. The only way to tell the difference is by asking the right questions. Whereas asking the wrong questions, like "Do you enjoy this?" can be harmful when interpreted in a biased way.

    And if there's one constant in biopsychosocialand, it's that asking the right questions is forbidden, lest it gives forbidden answers.
     
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  7. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

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    Many things can “support” recovery and wellbeing. People had quite low Rand SP 36 scores (around 30/100) and they didn’t change much so it was sad this was picked up in media around the world and trivialised in some ways (it was on the TV news in NZ) with no real appreciation of the disability people have (100 is fully functional) but I can appreciate that people felt it improved their wellbeing on several levels, especially a sense of acquiring a skill and social contact.

    Singing as a group activity is a big part of many cultures (something I miss not being able to take part in but have found learning piano has enriched my life instead). Nice English touch of getting a cup, tea and biscuits! I can see how this could be useful in NZ especially with Maori and Pasifika communities as a culturally appropriate health activity rather than a “treatment” but also using culturally appropriate activities improves people’s willingness to access assessment and treatments (if available) and they can bring along their whanau (family) to do it with them.

    Interestingly 7/16 people found unsuitable to take part in trial had excessive fatigue and unable to take part and one appeared to have PEM after their first one one one singing tutorial and was advised to drop out. At least they spent some time acknowledging post exertional malaise and looked out for it rather than rigidly applying a “mind-body treatment”.
     
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  8. Sean

    Sean Senior Member (Voting Rights)

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    I love singing and music. Used to sing in a small a capella group, and solo & accompany others with a guitar. If there is anything I am motivated to do as therapy it is singing and music.

    But it doesn't work. It is just another thing that makes you sicker the more you try. Trust me, I tried. Giving that up was the last non-essential in my life I let go.

    I vote for the 'providing adequate material support, and getting the quacks off patients' backs' therapy.

    When are we going to see the 5 million pound RCT on that blindingly obvious common-sense option?
     
  9. Hutan

    Hutan Moderator Staff Member

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    I have to admire whoever in English National Opera came up with this scheme to cope with the vagaries of being in the 'live entertainment' industry during a global pandemic i.e. move into the health care industry.

    Lest people new to the forum feel we have been overly harsh in the assessment of this treatment:
    The VAS (visual analogue scale) for breathlessness (running) is a subjective outcome. The results might be easily biased by someone feeling grateful for the mug and biscuits and the nice time singing.

    There was not a single objective measure of breathlessness, even though suitable measures do exist.

    There were actually 8 subjective breathlessness measures used:
    CAT (COPD Assessment Test) - (this is just questions)
    Dyspnoea-12 total score
    Dyspnoea-12 affective
    Dyspnoea-12 physical
    VAS breathlessness rest
    VAS breathlessness walking
    VAS breathlessness stairs
    VAS breathlessness running

    Only the last one produced a statistically significant improvement. Trumpeting that single subjective outcome as a result probably falls into the 'cherry-picking' category, especially when there was no statistically significant improvement in the subjective report about walking up stairs.

    Further, as hibiscuswahine said, these people almost certainly were not routinely going for a run. It would be interesting to know how many of the participants had actually done any running at all, and so were able to base their visual assessment scale response on something other than hope.
     
    Last edited: May 2, 2022
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Not sure if it's this one or another, but the Irish government gave an amount in that figure to a singing program with some church (or hospital with a church name, St-James something?). About 5M, IIRC.

    I don't think it was for a trial though, I think it was to expand the program as is because it already "works". I think that the future of the BPS ideology will see a lot of straight up skipping formal evidence and simply applying to get the programs funded immediately. One thing they've learned is that although trials can be picked apart, clinics have complete control over their records and cannot be audited. Once a program has been started, it has inertia of its own preventing it from being shut down. It ties people's reputation to their failure, and doing nothing is the easiest decision to make, no one even has to take responsibility for anything since it all works in complete secrecy.

    The writing has been on the wall for a while, now that the evidence base is falling apart. The ideologues are dismissing the very concept that it's possible to scientifically prove anything, and argue that it's superfluous to check since they already know it works, and they know it works because they've been doing this for years in practice already. No need for actual evidence if you can simply say it's already standard practice. No possibility of audits, no evidence to pick apart, everything in secret, behind closed doors.

    So there we see that the very idea of evidence-based medicine has directly lead to a belief system in which it doesn't even matter that all evidence contradicts a model of reality, since it's impossible to know, however they already know anyway, so they don't need to check at all. That's what I see all over the place with LC, the clinics exist, job's done.

    Science has left the building, shot twice in the back of the head. It buried itself afterward simply to get it over with.
     
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  11. Wonko

    Wonko Senior Member (Voting Rights)

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    By the same logic we should probably burn anyone accused of witchcraft, as we know that works.

    Hundreds of years of no more witches shows its an effective treatment.

    So no need for ethical approval, which could be problematic, just burn anyone accused.

    We know it works:grumpy:
     
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  12. Sean

    Sean Senior Member (Voting Rights)

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    :D
     
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