Keir E J Philip, PhD ∙ Harriet Owles, PhD ∙ Stephanie McVey, BA ∙ Tanja Pagnuco, MA ∙ Katie Bruce, MA ∙ Beth Warnock, BA ∙ Anya Chomacki, BA ∙ Harry Brunjes, MBBS ∙ Jenny Mollica, MA ∙ Adam Lound, MSc ∙ Suzi Zumpe, BMus ∙ Amiad M Abrahams, MA ∙ Vijay Padmanaban, MPT ∙ Thomas H Hardy, BMus ∙ Adam Lewis, PhD ∙ Prof Ajit Lalvani, DM ∙ Sarah L Elkin, MD ∙ Prof Nicholas S Hopkinson, PhD
Background
Post-COVID-19 condition (also known as long COVID) breathlessness is a common, complex, and frequently debilitating problem for which few evidence-based interventions exist. A previous randomised trial found that participation in an online 6-week breathing and wellbeing programme (ENO Breathe), using singing techniques, was associated with improvements in health-related quality of life (HRQOL) and breathlessness. We aimed to assess the impact of this intervention outside a trial setting.
Methods
In this cohort study, participants were referred from 51 UK-based National Health Service (NHS) long COVID clinics, where they had been diagnosed with breathlessness due to long COVID. The eligibility criteria of ENO Breathe were age 18 years or older, having long COVID with associated breathlessness, diagnosis and referral from a specialist collaborating NHS long COVID clinic, and access and ability to engage with the online programme. We compared baseline and post-intervention data to assess the effect of the ENO Breathe programme on HRQOL assessed using the RAND-36 Mental and Physical Health Composite (MHC and PHC) primary outcome, with an estimated minimally clinically important difference of 3; breathlessness (assessed using Dyspnoea-12 scores and visual analogue scales [VAS] for breathlessness at rest, walking, using stairs, and running); anxiety (assessed using the Generalised Anxiety Disorder-7 questionnaire [GAD-7]); and respiratory symptoms (assessed using the COPD Assessment Test [CAT]).
Findings
1413 programme participants were included in this analysis (mean age 49 years [SD 11·9], BMI 28 kg/m2 [7·2]). 1130 (80%) participants were female, 273 (19%) were male, and ten (1%) did not disclose their gender. 1165 (82%) participants were White, 87 (6%) were Asian, 47 (3%) were Black, 48 (3%) were of mixed or multiple ethnic backgrounds, 31 (2%) reported their ethnicity or race as other (ie, not one of the categories specified), and 35 (2%) did not disclose their ethnicity or race. Participants reported having long COVID symptoms for a median of 415 days (IQR 246–601) at the time of registration with the programme. 1188 (84%) of 1413 participants provided follow-up data on completion of the programme. Completing ENO Breathe was associated with improvements in HRQOL (median difference in RAND-36 MHC 2·98, IQR –1·53 to 8·42; and median difference in PHC 1·69, –1·32 to 5·01), breathlessness (mean difference in Dyspnoea-12 –4·29, 95% CI –4·64 to –3·94; VAS breathlessness scores walking median difference –5, IQR –18 to 6; stairs median difference –10, –25 to 3; and running median difference –3, –19 to 0), anxiety (median GAD-7 score difference –1, IQR –4 to 1), and respiratory symptom impact (mean CAT score difference –2·50, –2·81 to –2·19; all p<0·0001). The VAS breathlessness score at rest did not significantly change (median difference 0, IQR –10 to 13; p=0·24). The response to the ENO Breathe intervention did not differ by age, gender, ethnicity, or pre-existing asthma. There were no reported clinically significant adverse events.
Interpretation
The ENO Breathe programme can improve HRQOL, breathlessness, anxiety, and respiratory symptoms in people with long COVID and breathlessness. ENO Breathe could be tested in other major causes of breathlessness and might help inform the development and delivery of other related interventions.
I don't understand this paper. Any alternative medicine clinic would boast the same about their program, and this methodology would also "interpret" it as useful and "gib us money to do it again and again and again and also send us patients we like it xthanxby".
"Interpretation", instead of "results" is not something I see a lot. It is an interpretation, based on not much. It's not a trial so there doesn't seem to be a concept of a primary outcome, although it seems like this should be it, but I'm just spitballing based on the premise of the study, that surely an evaluation of breathlessness must be the primary goal of a breathlessness program, but then again maybe not, maybe someone finally hitting a flat E, or whatever, is the real goal, or maybe making friends?:
The VAS breathlessness score at rest did not significantly change
But it "can improve" other things that aren't the primary issue, and it "could be tested" in other things because sunk cost, I guess? This is really the fatal flaw with evidence-based medicine: they never accept evidence that something failed. Never. So this is not science. What is the point here? Who is this for?!
The absence of a control group in this study is an important limitation to consider. Appreciating considerable variation and heterogeneous, often non-linear, trajectories, data suggest that people with long COVID generally show a trend towards improvement in symptoms over time.29 Therefore, a degree of caution is required when interpreting effect sizes in this study.
However, the findings of our analysis align closely with that of a randomised trial on the same intervention,4indicating that a substantial contribution to improvements in symptoms is attributable to the intervention.
Oh, but that's 'actual medicine'. Actual medicine, and the doctors and nurses that go with it, have to be carefully rationed. Whereas, 'therapy', it seems for that, that anyone and their singing teacher friend can offer a programme, get published in the Lancet*, and get some government funds to support it.
Ok but I’m not unusual in not having the strength to speak much, let alone sing! Why do people keep trying to do music to us? It’s a sensory nightmare.
Ok but I’m not unusual in not having the strength to speak much, let alone sing! Why do people keep trying to do music to us? It’s a sensory nightmare.
I assume part of the problem is that clinicians aren't differentiating between persisting lung issues and ME/CFS when they are talking and writing about Long Covid. Presumably the people both directed to the therapy and who themselves think it's a good idea are more likely to be in the former category than the latter.
Also, we have had members here who enjoy singing in a choir. I guess for people without major sensory sensitivities when not in PEM, it can be enjoyable.
Also, we have had members here who enjoy singing in a choir. I guess for people without major sensory sensitivities when not in PEM, it can be enjoyable.
Which yet again conforms to the usual pattern when it comes to psychobehavioral interventions, including exercise: it's clearly the "for leisure" part of "exercising for leisure" that has the biggest influence, not the "exercising". It also explains why most of the secondary benefits amount to people enjoying themselves a bit, with no durable benefits since it's doing the enjoyable thing that is enjoyable.
Loads and loads of trials have confirmed that there aren't any real global (one might even say holistic) differences between intense HIIT cardio, low-impact leisure barely-exercise and everything in-between in almost every population studied. It mostly supports the idea that people enjoy enjoying enjoyable things, while loads of studies trying to figure out what is wrong with sick people behaviorally can pretty much be summed as "people dislike things that make them miserable and they will report that".
The simple truth is that if exercise were truly the marvellous magical medicine it's asserted to be, it would be covered by almost all health insurance systems, and almost all physical activity would be free. If it truly had the incredible health benefits that are falsely asserted to make it "the best medicine", it would pay for itself many times over because social activities are much cheaper than the health care they are asserted to prevent.
And yet that's not the case. Many private health insurers oddly cover some alternative medicine, but almost never exercise. They have accountants and actuaries doing all sorts of calculations about what level of expenses bring a comfortable return on investment, and they have all made the decision that this is not actually supported.
Very few industries have a longer view of profitability than insurance. They thrive on premiums paid today influencing expenses decades down the line. And they have made the simple decision that it's simply not real. Governments make the same decisions. They do subsidize a small level of physical activity, just the bare minimum and mostly for youth. They simply don't see a return on investment here, because the main outcome is people enjoying life, for a moment, and that's not considered important outside of failed clinical trials trying to justify why their failure was actually a success and that they should get more money to do it again, the same way, with the same intent, for all the same reasons, and expecting the same outcome, because it doesn't even matter anyway.
Somehow the widespread, false, messaging from the first few years about breathing dysfunction, about not breathing properly, whatever that means, has gone the same as Bigfoot sightings, since the universal availability of cameras in everyone's pockets, and assertions of deconditioning as the basis for conditioning therapy: gone with the wind.
It was constantly asserted as a fact, how since there is nothing obviously wrong with the lungs, clearly people with shortness of breath must just be breathing wrong. A simple-but-wrong model with an easy-but-wrong solution that entirely avoids the real problem. They call this evidence-based medicine.
Not sure if this has already been mentioned but this study has been posted by the ME Association on Facebook today.
Just interesting which studies they choose to post. https://www.facebook.com/share/p/1BKn4unqKJ/
Not sure if this has already been mentioned but this study has been posted by the ME Association on Facebook today.
Just interesting which studies they choose to post. https://www.facebook.com/share/p/1BKn4unqKJ/
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