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UK Inquiry Module 3: Impact on UK Healthcare Systems

Meanwhile, whenever I listen to witnesses related to the IPC (infection prevention and control) cell that gave shit advice about PPE etc during the pandemic, my already low opinion of the system only gets worse. I'm regretting listening to this afternoons witness who was involved with the Scottish side of this system, its all so mediocre. Im not learning much, all that is happening is that my sense of what shit priorities the UK has has been further cemented by evidence in this module. And 'the science' in the official infection prevention & PPE areas (including all the bullshit about droplet vs airborne) just hides behind 'lack of evidence' shit in order to serve an establishment agenda that has completely different priorities.

The lines of questioning of these witnesses so far does indicate that the inquiry is well aware of how shabby this side of things was. So I do expect one or more recommendations on this front. What exactly those will be I cannot sayt, but I doubt it has escaped their attention that precautionary principals were not followed on this front, and that the expert advice structure of the IPC cell was incredibly poor compared to the likes of SAGE (not that SAGE was a perfect model for what to do either). What the IPC Cell and SAGE did have in common was bullshit manipulation from the top via the use of 'claiming a consensus view was found' in order to airbrush dissenting opinions from published guidance (or guidance given privately to ministers etc).
 
That’s perturbing enough on its own: the very concepts of rehab and progress are unsuitable in this clinical context.

I know what you mean but I dont think Id go quite that far, mostly because not everyone is the same and the amount of potential for improvement does have a large degree of variability to it as far as I know. If we had actually done a good job of discovering all of the underlying clinical indicators and forms of damage caused by the virus, it would be more plausible to come up with appropriate, properly tailored responses per long covid sufferer. I dont think theres a one size fits all solution, and what might actually help one person could really damage someone else. But please keep in mind that to do justice to the witnesses who discussed some of this stuff, I would need to quote them properly, rather than just chuck out a few sentences of my own on this complex subject. I will try to find the bit I was thinking of so you can see what was actually said.
 
Or to put it another way, I consider long covid to be a blanket term that covers numerous things. Some may respond to particular forms of rehab and attempts to treat, others will suffer negative consequences if such things are attempted. So I would expect to find a lot of disagreement about this stuff, and a lot of very different experiences from individuals about what seemed to help them. If I am wrong about this then I am very open to changing my views on this, and I apologise if I have put my foot in it.
 
Or to put it another way, I consider long covid to be a blanket term that covers numerous things. Some may respond to particular forms of rehab and attempts to treat, others will suffer negative consequences if such things are attempted. So I would expect to find a lot of disagreement about this stuff, and a lot of very different experiences from individuals about what seemed to help them. If I am wrong about this then I am very open to changing my views on this, and I apologise if I have put my foot in it.

I’d definitely agree that there many types of covid sequelae, and long covid is probably an unhelpful term. Also agree about the extent of disagreement- and the tendency of people who spontaneously recover to attribute that to whatever they were trying at the time. You’re not putting your foot in anything and your digests of this inquiry are very helpful.
 
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.
 
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There is a reference to ME/CFS in this bit:

Pages 133-135 :

Q: Then just moving to healthcare and treatment. You have given evidence on post-exertional symptom exacerbation. Do you agree that advising Long Covid sufferers to participate in graduated exercise can exacerbate Long Covid symptoms?

PROFESSOR EVANS: So I agree that exercise at certain times and in certain individuals can be extremely challenging.
Everybody needs to be assessed and then again as part of that complex assessment post-exertional symptom exacerbation is one of those things that need to be explored.
The exercise rehabilitation that we're advocating that is being used in clinical trials is this personalised approach. So it's not a fixed regime, it's personalised to the individual, with pacing and progression working with the individual person. That's definitely what we would advocate.

Q. And would you recommend that advice on PESE (post-exertional symptom exacerbation) is included in the NICE guidelines on managing long-term symptoms of Covid-19 to prevent medical professionals providing potentially harmful advice on exercise?

PROFESSOR EVANS: Yes, absolutely, it needs to be incorporated both in terms of definitions and in clinical care, and it would be one of the phenotypes that future research trials should actually distinguish even further.

PROFESSOR BRIGHTLING: Can I just add a further comment though. So in the ME/CFS diagnosis, the -- PESE is part of the definition, whereas with Long Covid it clearly is recognised as being really important in some individuals, as Rachael's explained, so I agree it should be part of the guideline but not necessary as part of the definition of the diagnosis.

Q. Understand. And just while we're talking about the NICE guidelines, they haven't been updated since November 2021. Apart from PESE, are you aware of any other significant developments in the understanding of management of Long Covid which should now be reflected in those NICE guidelines?

PROFESSOR EVANS: I think there's certainly enough learning and clinical trials that have been conducted that another synthesis would be timely. And I think, as we keep saying, that if you've got clinical care and experts in the field, then you will promote needing these guidelines.
One thing I do want to highlight, on a much more positive side than perhaps we've heard a lot today, is that we're really in a good position because of the Long Covid advocacy groups, Long Covid Support, Long Covid SOS, Long Covid Kids, and I think actually we've taken a lot of learning about how to work with people living with the condition, both in terms of research and in clinical care. So for future guidelines we're already planning how we can work together and -- whether that's NICE or a different organisation, to actually synthesise what clinical care and current research looks like.
 
If those are the experts, nothing good will come out of the enquiry on this topic.

Please point me towards some experts that are focussed on the very different angle you are getting at, so that I may learn more about how they are presenting those views and the substance of the matter.

But sure, generally I wouldnt expect this sort of inquiry to solve any big disagreements in the expert field, nor to even hear some of these other views. Likely if they make any recommendations in this area, it will be to do with warning the public about the long terms risks when a pandemic virus is running amok, to do with funding of services, supporting people, doing trials etc. And evidence emerging from well-considered trials themselves is probably how the expert community could in theory eventually end up with a more enlightened view on the matters that concern you.

There are some areas where this inquiry can kick the arse of the establishment when it comes to dodgy orthodox approaches, shit priorities, incompetence etc, albeit with limits due to the inquiry being an establishment mechanism itself. So there are definite limits, and I suspect the area of concern in this instance is not going to be touched on by the inquiry at all, they are likely to be satisfied by the sort of stance those experts took, where they acknowledge and pay lip service to issues with post-exertional symptom exacerbation, but do not allow that to radically change the emphasis away from concepts such as rehabilitation (and a related agenda of 'getting people back to work'). I would actually like to be better placed to challenge such things, which is why I would find it very helpful if you can point me towards some useful sources who you think have got things right in a way these particular experts havent. Cheers.
 
Please point me towards some experts that are focussed on the very different angle you are getting at, so that I may learn more about how they are presenting those views and the substance of the matter.

But sure, generally I wouldnt expect this sort of inquiry to solve any big disagreements in the expert field, nor to even hear some of these other views. Likely if they make any recommendations in this area, it will be to do with warning the public about the long terms risks when a pandemic virus is running amok, to do with funding of services, supporting people, doing trials etc. And evidence emerging from well-considered trials themselves is probably how the expert community could in theory eventually end up with a more enlightened view on the matters that concern you.

There are some areas where this inquiry can kick the arse of the establishment when it comes to dodgy orthodox approaches, shit priorities, incompetence etc, albeit with limits due to the inquiry being an establishment mechanism itself. So there are definite limits, and I suspect the area of concern in this instance is not going to be touched on by the inquiry at all, they are likely to be satisfied by the sort of stance those experts took, where they acknowledge and pay lip service to issues with post-exertional symptom exacerbation, but do not allow that to radically change the emphasis away from concepts such as rehabilitation (and a related agenda of 'getting people back to work'). I would actually like to be better placed to challenge such things, which is why I would find it very helpful if you can point me towards some useful sources who you think have got things right in a way these particular experts havent. Cheers.

It’s tricky to find experts in the field of exercise who will say robustly that exercise is contraindicated, rather than “it has to be managed carefully and tailored to the person”. What’s the point of being a professor of gloom? What kind of career can be built on that?

Physios for ME offer pretty trenchant advice to other physios on this topic, and they are adamant that exercise is not curative for these conditions, and has to be very carefully managed when other conditions mandate physio for people with ME. They have a fair assortment of materials for professionals here: Physios | Physiosforme. But I doubt they have much if any academic clout - their expertise is practical.

Scientists whom the ME community like tend to be people searching for explanations rather than cures, from geneticists like Chris Ponting (Decode ME) to wacky microbiologists like Bhupesh Prusty. These people will happily take it at face value that current therapies are harmful rubbish, because it’s part of the pitch for researching aetiology. They wouldn’t be able to get into the weeds of discussing treatments for a select committee, of course.

Otherwise, there are very few eminent doctors who have any interest in really gunning for the CBT and graded exercise establishment. One such is Jonathan Edwards, a retired rheumatologist who was involved in some trials of his wonder drug for arthritis on ME patients, and stayed involved as a hobby after the trials failed. But there really isn’t a plethora of respectable names to suggest.

The problem here is really with our whole concept of eminence and expertise, which essentially is a matter of vested interest. And yes, I know that sounds a bit conspiraloon. I don’t like having arrived at this position either.
 
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