HEAL-COVID is jointly Sponsored by Cambridge University Hospitals NHS Foundation Trust and The University of Cambridge. The acute effects of COVID-19 are now well described. Evidence is emerging of serious longer-term complications occurring in the convalescent phase of the illness in a significant proportion of patients; particularly cardiovascular and pulmonary complications. The ill-defined syndrome, "Long COVID" is likely to include a constellation of different conditions traversing post-ICU syndromes, significant cardiopulmonary complications, post-viral syndromes and exacerbations of underlying conditions. Patients have reported a range of longer-term symptoms associated with Long COVID that have significant impacts on their quality of life. To date, there has been little work evaluating treatments in the convalescent phase of COVID-19. HEAL-COVID aims to evaluate the impact of treatments on longer-term morbidity, mortality, re-hospitalisation, symptom burden and quality of life associated with COVID-19. The first two treatment arms are Apixaban and Atorvastatin, with further treatment arms to be added at the direction of the UK COVID-19 Therapeutic Advisory Panel (UKCTAP). https://clinicaltrials.gov/ct2/show/NCT04801940?cond=COVID-19&lupd_s=03/07/2021&lupd_d=14
University of Liverpool isincluded as a collaberator. https://clinicaltrials.gov/ct2/show/NCT04801940?cond=COVID-19&lupd_s=03/08/2021&lupd_d=14 Has anyone come across this - FACIT? "The Functional Assessment of Chronic Illness Therapy -Fatigue Scale (FACIT-Fatigue) is a 13-item measure that assesses self-reported fatigue and its impact upon daily activities and function. It has been validated for use across a range of populations. The FACIT-Fatigue has a 7-day recall period and is scored on a 5-point Likert Scale from "0-Not at all"- to "4-Very much". Individual items scores are summed (2 items of are reversed scored), multiplied by 13 and then divided by the number of items answered with a higher score indicating less fatigue and better quality of life." ETA: It appears to have originally been designed for cancer patients. https://www.facit.org/measure-english-downloads/facit-f-english-downloads
I just had a look. Yet another questionnaire that is about fatigue yet doesn't actually try to dig any deeper into what the patient might mean by "tired". From the start when I got ill people started pushing the words "tired" or " fatigued" into my mouth. As someone who had experience with anaemia and hypothyroidism you might think I should have known better or pushed back harder but with the word finding difficulties I usually just wasn't able. When I protested they demanded what word would you use then? Give me a nap or a day or two to mull it over and I might come up with something but on the spot? Nothing came to mind. When you've been lucky enough to have previous good health you go along with it because you have nothing to compare it to, you just assume this is normal for abnormal tiredness. Perhaps if they started off by identifying what tiredness means to the patient - how it feels. What does this new level of "tiredness feel like to you? -I want to sleep all the time or very frequently. -I need lots of naps during the day. -Sometimes if I can't achieve something and take a nap I can achieve it afterwards. -When I do sleep I have difficulty waking up. -I feel briefly refreshed when I wake up. -I feel awful when I wake up - When I tire I feel like I have hangover - Do you experience aches and pains as part of becoming "tired" - Do you feel ill when you get tired? Then drill down further into that. - Do other symptoms get worse as you tire? - Do any symptoms get better? That's off the top of my head but you could go on and ask lots of questions about how physical activity feels as you tire & I would separate out aerobic & anaerobic types of activity. Then a different section of how it affects cognition. Then different things that might affect how quickly you tire and how that might feel - eating and diet, weather, multitasking, relative complexity of a task, switching between tasks etc. And so on. I reckon just asking the right questions would elicit quite different responses from a hypothyroid patient or an anaemic patient and so on. If you don't really understand what fatigue is or tiredness and how different types distinguish from each other then you may be targeting the wrong treatment at a patient and you won't be measuring outcomes and harms properly. It is entirely possible IMO to simultaneously improve some aspects of "fatigue" while making other aspects worse.
I can, unfortunately, see problems with this approach tho. My brain is likely to shut down within a few questions, as a 'simple' question is never just one question, at one time, as I and my environment exist in more than one moment (unless it's something like 'is the light on?') possibly less depending on how much my desire to be 'accurate' kicks in. If it does then my answer, to the same question, will contain apparent contradictions, apparent to those who do not feel/experience the way I do, and cause them to 'switch off' and ignore anything I say. Not helped by my tendency to go off on what others consider unrelated tangents, which are generally either part of my attempts at comparisons I hope that others will be able to relate to. Or possibly as a sign of cognitive failure. Often both. Impossible to know in the moment. And that's even if relatively fresh. Seen it happen, used to happen all the time when speaking to medical type people. Happens virtually instantly with benefits type people who tend to want a simple 3 word answer to a question that needs a pages long answer even to get in the ballpark.
Would there be any mileage in S4ME and our charities writing to researchers in this area to try to avoid the many ME-blind stupidities coming down the pike? @Andy - anything like this under way?
There is nothing like you suggest currently planned or under way I'm afraid. The best place to start, for anybody interested, would be a new thread to discuss the possibility.
You always make sense to me . This isn't something that should be done on the spot for people like us or those struggling with "fatigue" whatever that is. No. I think this is something that a person should be able to go away and think about. Given as much time as possible to fill in. If it takes them a week fine, if it takes them 6 weeks also ok. The accuracy of the answers being of paramount importance not just the time it takes. Even better would be if the participants could discuss it. I know in the past I have symptoms I struggled to describe - I get close but not quite right. Then someone on here makes an off the cuff comment and Bingo! Exactly what I have been trying to find the words for for the past 20 odd years.
