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

Andy

Andy

Senior Member (Voting rights)
"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
 
How have you involved patients and members of the public in the design and delivery of the study?
In addition to recruiting people to take part in the study, we are collaborating with patient partners in the design and delivery of the study.A dedicated team of people who have experienced Long COVID are working alongside the TLC research team to provide valuable insight and feedback.
If you would like to be involved, please contact Lee Aiyegbusi.
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Gary Price (patient partner)
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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.



Where can I get more information about recovering from Long COVID?
Please refer to the NHS Your COVID Recovery website.
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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:

As you find yourself recovering from COVID-19 you may still be coming to terms with the impact the virus has had on both your body and mind.
These changes should get better over time, some may take longer than others, but there are things you can do to help.

'Your COVID Recovery' helps you to understand what has happened and what you might expect as part of your recovery.
In some people, different things contribute to the fatigue and make it last a long time. Low levels of physical activity, a disturbed daily routine, poor sleep patterns, demanding work, caring responsibilities, low mood, anxiety and stress can all make fatigue worse.
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What can I do about fatigue:.....
  • Keep active. Energy levels are also helped by staying active. Being unfit makes you more tired. Once the amount of activity you are doing is stable, try to increase the amount you do slowly and gently. Look at the section on getting moving again to help with this.
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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?
 
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.
 
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
The University of Birmingham-led project will include a Lived Experience Advisory Panel (LEAP), made up of a group of long COVID patients, who will work with researchers and clinicians to develop the research from a patient perspective. LEAP member and long COVID patient Dave Stanton, aged 74, welcomed the research.

The RAF veteran said: “COVID-19 has knocked me sideways, with a long and debilitating battle since initially becoming ill in March last year, including having to have surgery to replace my pacemaker following additional damage the virus has caused to my heart.

"Each day is baby steps in terms of recovery, but almost one year on I am still battling a myriad of symptoms from memory loss to difficulties breathing, pins and needles, and immobility.

"I am delighted to be part of this research project, which will give hope to so many out there who are, like me, struggling with the longer term crippling effects of this virus.”

The research team consists of multi-disciplinary experts heavily involved in COVID-19 research from the University of Birmingham, including Dr Krish Nirantharakumar, Dr Joht Singh Chandan, Dr Olalekan Lee Aiyegbusi, Professor Janet Lord, Professor David Wraith, Professor Alastair Denniston, Dr Sarah Hughes, Dr Louise Jackson, Dr Grace Turner, Dr Samantha Cruz Rivera, Dr Anuradhaa Subramanian, Professor Georgios Gkoutos, Professor Elizabeth Sapey, Professor Tom Marshall, Dr Christel McMullan, and Professor Steven Marwaha.

It also includes Dr Puja Myles and Dr Tim Williams, of the Medicines and Healthcare products Regulatory Agency (MHRA), and Dr Elin Haf Davies, of Aparito Limited.

Project partners will include patient campaign group LongCovidSOS, the National Institute for Health and Care Excellence (NICE), the UK Coronavirus Immunology Consortium (UK-CIC), and the Post-hospitalisation COVID-19 Study Consortium (PHOSP-COVID). Long COVID patients and their carers have co-developed the research plan, including COVID-19 survivor Gary Price who will also act as a co-investigator.
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Like I said, very happy to be proved wrong.
 
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.
 
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
 
Jonathan Edwards said:
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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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).
 
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