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In progress: Therapies for Long COVID in non-hospitalised individuals: the TLC Study

Discussion in 'Long Covid news' started by Andy, Jun 28, 2021.

  1. Andy

    Andy Committee Member

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    "Approximately 1 in 10 people with COVID-19 continue to experience symptoms and impaired quality of life beyond 12 weeks, which is known as ‘Long COVID’. Common Long COVID symptoms include, extreme tiredness, shortness of breath, chest pain or tightness, ‘brain fog’, insomnia, heart palpitations, dizziness, pins and needles, joint pain, depression, anxiety, tinnitus, earaches, nausea, diarrhoea, stomach aches, loss of appetite, a high temperature, cough, headaches, sore throat, and changes to sense of smell or taste.

    Through a partnership with the Clinical Practice Research Datalink using electronic GP records, the University of Birmingham-led team will identify and recruit thousands of non-hospitalised patients with Long COVID who have had symptoms for 12 weeks or longer to a major clinical digital study.

    At the heart of the study will be the use of a digital platform, called Atom5™ from med-tech company Aparito Limited, which will be configured for the study by experts from the University of Birmingham with patient input. Participating patients will be given access to the digital platform, allowing them to self-report symptoms, quality of life and work capability.

    A subgroup of patients will receive blood and other biological tests to understand the immunology of Long COVID, and will wear a device that will measure their heart rate, oxygen saturation, step count and sleep quality.

    Using their findings, the researchers will co-produce with patients a targeted intervention for Long COVID, tailored to individual patient need. Delivered remotely in the community, via the Atom5TM app, it will provide critical support and information to empower patients in self-managing long COVID. In addition, they will provide tailored resources to support symptom management and nurse-led support for those with the severest symptoms.

    The researchers will also use the digital platform to assess whether the treatments and supportive interventions reduce symptoms, improve quality of life, and are good value for money.

    All data gathered will be used to help the scientists characterise the symptoms, health impacts, and underlying causes of Long COVID syndromes in non-hospitalised patients – providing invaluable insight not currently available."

    https://www.birmingham.ac.uk/research/applied-health/research/long-covid/index.aspx
     
  2. Andy

    Andy Committee Member

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  3. Sean

    Sean Senior Member (Voting Rights)

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    :thumbup:
     
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  4. Hutan

    Hutan Moderator Staff Member

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    There are 24 people named as being part of the study. So far, there seems to be only one patient partner. This is a 2.2 million pound study and the plans seem pretty much sorted out. So, although there seems to still be some potential for people with Long Covid to be involved, there isn't a lot of evidence that they have been to date.



    This is concerning. I think we have a thread about that NHS website covering Long Covid. it is in line with the NICE Long Covid guideline which basically ignores the connection with ME/CFS and the possibility of long term illness, and suggests that a recipe of sleep hygiene, good diet and keeping active will fix all, and implies that anxiety and stress are causes of symptoms that don't resolve.

    From the NHS Your Covid Recovery website:

    I don't think this bodes well. It's a big amount of money for this study, but my bet is that the findings might already be determined and are very much BPS compatible (e.g. the people who are active are the ones that recover, therefore exercise is the cure). I'd love to be proved wrong. Does anyone have insights into the people involved?
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This looks pretty empty of content or value to me. Even the headline explainer does not make sense:

    A major new £2.2m government-funded research project to improve the treatment, causes and symptoms of Long COVID in non-hospitalised patients.

    We don't need to improve the causes of Long Covid.

    My guess is that this is funded through NIHR, which is designed to do bad research for political convenience.

    I don't see how patients can be empowered or supported by information if we don't have any. And I don't see how care is going to be individualised if nobody knows what to do.

    I strongly suspect that this only exists because of the clamour for something to be done - typified by the ill-thought out articles in the Guardian today. Yes, something it would be good if something could be done but you don't discover treatments this way. You do the hard grind of well-designed research.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    This article suggests more of a commitment to patient involvement than the website does, with the involvement of LongCovid SOS.
    https://www.birmingham.ac.uk/news/latest/2021/02/long-covid-research-treatment-symptoms-health.aspx
    Like I said, very happy to be proved wrong.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My only insight into the people involved is that I know of some of them and there are far too many of them. A serious project would not have more than three professors at most. You never get any sort of sensible science with more people than that trying to make decisions on design. This looks like major window dressing to me.

    The only good thing about it I can see is that at least some attention will be directed to the problems of ME/CFS and related illness. At least they look like doing some actimetry over time - someone in the team may realise it needs more thought and do something about it.
     
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  8. Andy

    Andy Committee Member

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  9. Andy

    Andy Committee Member

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    Protocol published.

    Abstract
    Introduction Individuals with COVID-19 frequently experience symptoms and impaired quality of life beyond 4–12 weeks, commonly referred to as Long COVID. Whether Long COVID is one or several distinct syndromes is unknown. Establishing the evidence base for appropriate therapies is needed. We aim to evaluate the symptom burden and underlying pathophysiology of Long COVID syndromes in non-hospitalised individuals and evaluate potential therapies.

    Methods and analysis A cohort of 4000 non-hospitalised individuals with a past COVID-19 diagnosis and 1000 matched controls will be selected from anonymised primary care records from the Clinical Practice Research Datalink, and invited by their general practitioners to participate on a digital platform (Atom5). Individuals will report symptoms, quality of life, work capability and patient-reported outcome measures. Data will be collected monthly for 1 year.

    Statistical clustering methods will be used to identify distinct Long COVID-19 symptom clusters. Individuals from the four most prevalent clusters and two control groups will be invited to participate in the BioWear substudy which will further phenotype Long COVID symptom clusters by measurement of immunological parameters and actigraphy.

    We will review existing evidence on interventions for postviral syndromes and Long COVID to map and prioritise interventions for each newly characterised Long COVID syndrome. Recommendations will be made using the cumulative evidence in an expert consensus workshop. A virtual supportive intervention will be coproduced with patients and health service providers for future evaluation.

    Individuals with lived experience of Long COVID will be involved throughout this programme through a patient and public involvement group.

    Open access, https://bmjopen.bmj.com/content/12/4/e060413
     
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  10. Andy

    Andy Committee Member

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  11. Andy

    Andy Committee Member

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  12. bobbler

    bobbler Senior Member (Voting Rights)

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    Hmm as long as the pattern-reading is sensible. I can also see the potential for the (and this reminds me of that old video with Gerada saying 'push through even when you feel terrible that day) idiocy of someone noting 'people do less on days where they say they feel worse' - rather than noting that continual pushing (and however that should be defined) is what ends in a more debilitation longer-term.

    I feel cynical that the data often isn't shared as you'd hope in raw graphs where you can see the full picture rather than snippets people want to show.

    I hate their obsession with telling people they should 'avoid the boom-bust' as if that is 'help', whilst never actually reducing what they have thrown at them overall too - it's the same attitude of someone giving out double-workload and then saying 'you should just manage it better' or 'it's not double as you can just do it badly etc', whilst also not providing leeway on the how it is done either. Such things are well-known to increase or cause stress (not anxiety).

    I'd also say that getting enough rest - even if it is for a 'crash' - is an even bigger issue that these people want to gloss over, and the routine and sleep (with centuries out of date myths) obsession just gives me heebeegeebees on their attitude re: this. We've a generation of ME/CFS people who could say the double-whammy of maybe not being allowed to 'control our lives' (our pacing not theirs) to work in body's limits (different to their prescribed routiens which I find opportunistic controlling and institutionalisation) but also never ever being allowed the full recovery time any overdoing caused. It always being cut short and interfered with.

    And pre all the BPS there was very good data on the biomedical impact of that [stress] (much of which seems to have been disappeared into the myth of it somehow being 'perception' rather than all these basic facts of if you do x to someone or even an animal it causes y).

    A simple example would be if someone started using a pneumatic drill outside your house/office for 10hrs a day - the 'old days' used to say that will eventually hurt anyone's health and is pretty unkind, these days it seems 'if you're bothered bung some noise cancelling headphones (which do nothing about the vibrations) on' is allowed, even if that continues everyday for years on end. What difference does measuring things make if black is now turned white on whether it's a real problem or in the victim's mind/perception/other tosh?

    Monitoring the minutiae sounds of little use without any intention for it to be used for anything other than telling someone 'to sort it themselves', or even apportioning 'cause' externally where it is relevant instead of calling someone 'over-sensitive' type thing.

    Unless your attitude to disability is to make life more possible for them, instead of apportioning 'blame' as 'don't expect people to cater to your needs and limitations' this is just an excuse to leave people in the same hell we've been left in for years of choose between losing your job/family/friends or your health (and then losing your job/family/friends).
     
    Last edited: Nov 1, 2022
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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