Thanks. Searching the relevant days transcript for the word rehabilitation results in more stuff than I will be able to quote here, but I offer one or two examples where the issue I referred to and that you were getting at does come up:
Pages 108-110:
Q: Moving on to non-drug treatments then. At paragraph 63 of your report you observed that there are tensions around the use of physical activity in Long Covid rehabilitation programmes. Could you tell us about that, please?
PROFESSOR EVANS: Absolutely. And it speaks really to what we have as a fairly simple definition of Long Covid whereas it really is a very complex condition and it is made up of lots of different types of condition with
different types of symptoms and just like Chris was highlighting the need for a precision medicine approach for medication trials, the same is very likely to be needed for trials of rehabilitation.
So the tensions around physical activity is that for any of us we need to be physically active, that's good for long-term health, it prevents the development of long-term conditions. So all of us need to be physically active. Of course, Long Covid with the fatigue and all these difficult symptoms impair physical activity.
The rehabilitation interventions are really for healthcare professionals and the people living with Long Covid to work together to try to improve physical activity with the aim of improving symptoms. For many people that's a very successful approach. But there is this subgroup of people with Long Covid with this really challenging symptom of post-exertional symptom exacerbation where we really have to be careful.
That doesn't mean that we don't deliver any rehabilitation but it has to be personalised, it has to be at the right time and I don't think we know that for everyone at the moment. When somebody has got that really fulminant fatigue they can't even really move around the house, they're getting crashes, that's not the right time for these interventions.
So, it has to be, at the moment, very individually judged and we would like to get to the point where we've got research trials that really highlight who and how we should do this.
So the tensions are that we've got this very careful balance between all of us wanting to improve physical activity but how do you do it and it's this balance between pacing, and actually then progressing what someone is doing and that has to be incredibly carefully done with experts.
Q. I wonder, could I ask you to just introduce us to the concept of pacing for managing someone's Long Covid symptoms?
PROFESSOR EVANS: Yes, and this is a technique that's been used for decades in other long-term conditions and in other post-viral syndromes, so it's been used in HIV in particular. The aim is to understand that everyone's got a certain amount of energy and this becomes very clear in Long Covid and that energy is -- can be used in a physical task, an emotional task or a concentration task.
So pacing is how to use the energy for things that people want to do, or have to do, but then to almost get some rest back to reset and not trigger that fatigue.
Pages 110-113 :
Q: Can you tell us about any other rehabilitation interventions that are currently being used or being considered for use?
PROFESSOR EVANS: Yes, so rehabilitation is an incredibly broad term and I was talking earlier really about exercised-based or physical activity-based interventions. So there are a number of randomised trials now that have read out this year that overall give very positive results of the type of programme where you have this close working with the healthcare professional and the person, and then progress the physical activity and symptom management as you go through the course in a personalised way.
Other interventions that are being used are pacing and also with a little bit of progression those trials are still ongoing. As trials of breathing techniques and respiratory muscle training they've also shown promise. So there's a number of trials that are ongoing at the moment. Some have finished with positive results and some are ongoing.
Q. Is there a trial also around sleep?
PROFESSOR BRIGHTLING: If I can comment on that.
So the NIH Recover, so this is in that very large funding tranche in the United States, they then have both pharmacological and non-pharmacological interventions for sleep. So it includes drug interventions such as melatonin to try and then reset the body's clock and also then cognitive behavioural type interventions.
There's also within the NHS, Sleepio, which can also be accessed as a cognitive behavioural tool for then trying to manage sleep.
Q: If we take everything we have discussed about this topic together are there any areas of research focus you would recommend today to advance the treatment of Long Covid?
PROFESSOR BRIGHTLING: So I think what we really need to have is a group of platform trials. So what I mean by that is the STIMULATE-ICP was focusing on repurposing therapies that are already available for other treatments and are largely low cost. But we recognise that there may be a need to have more specific therapies for certain types of changes particularly changes in the immune system that we are now recognising in subgroups of people with Long Covid.
So to do that you need a trial that's established where you have common entry into the trial, common outputs in terms of then the way we measure how well somebody has done and then individual arms so that you
then identify the patient that is likely to respond to an intervention and then put them into a trial where it's tested against a placebo, so a randomised control trial but within a platform.
And one of the things that we will be trying to seek is support from NIHR and UKRI. We had asked for support for a platform trial now a couple of years ago but things have really moved on in terms of our understanding in the science and what end points to have, so we shall be asking again for support for such a trial.
The arms themselves may need support from industry as well, and when I've had discussions with industry some of the companies are still looking to support trials within Long Covid. But the story in industry is very similar to the story we were telling around the clinics in that during the pandemic there were Covid groups that were formed in most major pharmaceutical companies that were interested in both acute Covid but were also thinking about therapeutics for Long Covid and those groups have almost entirely now been disbanded and gone back to their individual therapeutic disease areas, so actually getting support from companies is also challenging.
We have had some traction and I think we are in a position soon to then be able to go back to government funding through NIHR and UKRI for such a trial which would complement the activity that then is being through STIMULATE-ICP and complement the non-pharmacological interventions that we've just been discussing.
