UK - NHS England online tool and clinics for long Covid.

Invisible Woman said:
Overall a good letter but....



Bolding mine.

This has a suspicious whiff of pacing up as AfME put it. Although he does say it should take into account the patient's energy envelope & it is written about post covid & not necessarily ME.

My big gripe is that it takes more than a month or two to get to grips with one's energy envelope and it's a moving target at the best of times. There seems to be an easy assumption of predictability and stability that doesn't necessarily reflect the true nature of ME at least. Going by some of the tweets posted on the forum post covid seems fairly unpredictable too.
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:banghead::banghead::banghead:
 
NelliePledge said:
A fair point @Invisible Woman i think it can be dangerous to assume that those with no experience of ME understand what very gradual means. For clarity it would be better to give an indication in terms of periods of time eg saying you’re looking at very gradually over several months rather than a few weeks.
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I don't think that's much better to be honest.

IF you are at risk of developing ME - and I accept we can't tell who is or is not - then to my mind it takes many, many months to get your head around the concept of pacing/energy envelope/spoons or analogy of choice. it may well take years for the cognitively impaired. Even when you do it is a moving target because the disease itself fluctuates, environmental factors, minor bugs and so on constantly affect what you can and can't achieve. Plus the cognitively impaired may find it difficult to observe when they've gone a bit too far.

Plus of course the same tasks on different days take different levels of resources.

Assuming the possibility of ME, unless you're also assuming some mild & stable form of the condition, one should not at this point be discussing increasing activities at all. If you're allowing for the possibility of ME then you have to allow for the possibility of it becoming severe through mismanagement.

For those not at risk if developing ME it doesn't matter so much when they feel well enough to go do stuff they automatically will. It just might be advisable to pull their punches for a while.

Here's the thing - unless they are suffering from primary depression people will always want to do a bit more when they feel better. It's automatic They really need to be told to do less.

The problem we have here is one of trying to be balanced. You don't want people who could be active lounging around but encouraging those who are at risk of developing ME to rehabilitate will make ME more likely and increase the likelihood of severity. We can't tell which group is which because of the last 35+ years of faux science.

The snag is by trying to "balance" the two groups the group who will be harmed is the group already most likely to be affected by a condition that will destroy their lives.
 
Invisible Woman said:
Overall a good letter but....
Crucially, the guidance fails to emphasise the importance of establishing a safe baseline of activity (which for some people means reducing activity levels) and then progressing with very gradual increases in physical and cognitive activity which take account of a person’s daily energy envelope during the crucial early stages. This is a process known as pacing – it is widely regarded as a very safe and effective way of managing activity and energy in a post viral situation.
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Bolding mine.

This has a suspicious whiff of pacing up as AfME put it. Although he does say it should take into account the patient's energy envelope & it is written about post covid & not necessarily ME.
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I agree with you @Invisible Woman.

Thinking about my wife, she has improved to some degree over the years, albeit long way from recovered. But that has come about that by taking the opposite strategy to what is suggested there, coming at it from the other direction.

She does not make conscious efforts to increase her activity incrementally; 'increasing' is not the guiding metric. She instead always strives within what she is capable of, wherever that limit may be at the time, and over the years I think that limit has increased a bit for her.

It's not about "progressing with very gradual increases in physical and cognitive activity", it's about living within and towards your limits as best as possible, and letting that limit guide you. It may increase for you, it may reduce for you, indeed it may well fluctuate for you. If you are lucky, then there will be an upward trend over time, but if so then the trend is a happy side effect of the strategy you are pursuing, not actively being driven by it.

If you seek to follow a programme of increasing exercise, that will likely fool you into not properly recognising the limits, and so push through those fragile limits and blow it all apart again.

To the naive it can sound like what I'm saying is the same as what the bold text above is saying, and some may well assert it is. But no, it is not. The bold text is predominantly open loop, with a bit of lip service to closed loop. Predominantly increase, increase, increase activity, with lip service qualifier saying to stay with the envelope limits - but the focus on increasing activity can undermine the necessary focus on limits and to be guided by them.

Closed loop is to recognise the limits and to use them as the guiding yardstick for what activity to do or to not do. To not even think about increasing activity, but just do whatever you can sensibly do in the moment. If those limits extend, then so will your activity as a natural follow on. It's all about the metric you focus on - should not be focusing on increasing activity, but focusing on working within your limit.

As I write this I can see how this runs so very counter to mainstream rehabilitation and will be alien to many who are familiar with and see it as a guiding light. But the whole point is that ME/CFS is far from mainstream.
 
Barry said:
It's not about "progressing with very gradual increases in physical and cognitive activity", it's about living within and towards your limits as best as possible, and letting that limit guide you. It may increase for you, it may reduce for you, indeed it may well fluctuate for you. If you are lucky, then there will be an upward trend over time, but if so then the trend is a happy side effect of the strategy you are pursuing, not actively being driven by it.
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Very well put. :thumbup:
 
Invisible Woman said:
Here's the thing - unless they are suffering from primary depression people will always want to do a bit more when they feel better. It's automatic They really need to be told to do less.

The problem we have here is one of trying to be balanced. You don't want people who could be active lounging around but encouraging those who are at risk of developing ME to rehabilitate will make ME more likely and increase the likelihood of severity. We can't tell which group is which because of the last 35+ years of faux science.

The snag is by trying to "balance" the two groups the group who will be harmed is the group already most likely to be affected by a condition that will destroy their lives.
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To be honest I'm not too worried about that aspect of balancing the information. I'm unconvinced that a pathological fear of activity even exists, at least commonly enough to be included in general guidance – most non-depressed people will just get bored with unnecessary rest. If they push themselves gently and don't suffer relapses, they'll naturally begin to gravitate back towards their normal lives. As you say, it's when people are getting symptoms after activity when they need to be steered towards doing less.

The balance I'm more worried about is warning about the prospect of long-term or lifelong illness. Obviously we don't want to be handing out really dispiriting advice to people who're already struggling after being used to leading active lives – especially if it turns out they've actually got a self limiting post-viral syndrome and will recover – but the prospect is real enough to make us want to warn people not to take risks.

There's also the fact that a full recovery could take much longer than they realise, perhaps a year or more. That's a heck of a financial and career impact, especially for people in their 30s and 40s with mortgages and/or young families. They're already discovering that the benefits 'safety net' is totally inadequate, and people in certain unlucky situations have to dispose of much of their capital before they qualify for any help at all.

Barry said:
It's not about "progressing with very gradual increases in physical and cognitive activity", it's about living within and towards your limits as best as possible, and letting that limit guide you. It may increase for you, it may reduce for you, indeed it may well fluctuate for you. If you are lucky, then there will be an upward trend over time, but if so then the trend is a happy side effect of the strategy you are pursuing, not actively being driven by it.
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Exactly so, especially when the possibility of spontaneous recovery is fading. But before you can manage it well, you have to accept that your life has changed drastically – and possibly irrevocably – and that takes time.

You have to let go of a lot of anger, disappointment, frustration, and 'why me?'; you have to recognise and ditch toxic relationships; you have to readjust your finances and all your ambitions and expectations. It's a grieving process, and no-one can be forced down the road any quicker than their own pace. This is where counselling and psychological therapies could really help some people...but of course that sort of careful, person-focused work can't be given an idiotic set of initials and rolled out via some half-arsed internet programme, so it doesn't appeal.
 
Not sure if it's been posted: https://www.longcovidsos.org/post/longcovidsos-respond-to-the-new-nhs-your-covid-recovery-service.

The Your Covid Recovery portal is welcome in that it is a first step towards the government properly acknowledging that recovery from Covid-19 is not straightforward. However, we believe that at present it cannot fully address the needs of the majority of Long Covid sufferers.
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The NHS portal contains a great deal of good advice, but seems to be targeted at those who were hospitalised and are having ongoing symptoms in the medium term. The assumption is that these patients will improve over time and need advice to help them manage symptoms which will settle down.
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Other sufferers have neurological symptoms that need investigating, or continuing problems with their lungs. In all of these cases, they will still need to ask their GP to refer them to regular NHS clinics so in this respect the portal does not change anything. Unfortunately some people with Long Covid have found their GPs to be less than sympathetic, and a number have been told their symptoms are caused by anxiety.
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Kitty said:
To be honest I'm not too worried about that aspect of balancing the information. I'm unconvinced that a pathological fear of activity even exists, at least commonly enough to be included in general guidance – most non-depressed people will just get bored with unnecessary rest.
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Me too. I don't think it is necessary to try to take a balanced approach and it irks me a bit that this is what seems to be the case from the MEA.

We can't & don't try to offer advice on anything beyond ME and how it can develop and be made worse. So why not just do that?

Why do our national charities still seem to be toeing the establishment line?
 
I think the criticisms of the MEA letter about the NHS post covid guidance are a little unfair. Here's the relevant bit of the letter where it is specifically talking about the initial post viral fatigue stage:

Thirdly, and most important of all. The guidance fails to acknowledge that people with any significant degree of post-Covid fatigue need an initial period of convalescence involving rest and relaxation which might then be combined with a very gradual and flexible approach to increasing physical and cognitive activity.

Instead, the emphasis in the NHS guidance is all about “Getting Moving Again” and stressing progressive increases in exercise related activity, goal setting, and strategies that we would not recommend to people with other types of post-viral fatigue (e.g. use of an exercise bike and only stopping an activity when pain becomes extreme).

Crucially, the guidance fails to emphasise the importance of establishing a safe baseline of activity (which for some people means reducing activity levels) and then progressing with very gradual increases in physical and cognitive activity which take account of a person’s daily energy envelope during the crucial early stages. This is a process known as pacing – it is widely regarded as a very safe and effective way of managing activity and energy in a post viral situation.

People with continuing and debilitating post-viral fatigue should normally only move on to a more active strategy, which involves what most people understand as exercise rather than physical activity, when a period of sustained improvement has occurred.

There are real dangers of causing a further relapse or exacerbation of symptoms in exercising beyond limitations in post viral fatigue states. There is also a potential for real and lasting harm, including increasing the chance of going on to develop ME/CFS, by advising people to start using an exercise bike when they cannot go for a walk.
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The bit about increasing activity is clearly placed in the context of waiting until the initial convalescence stage is over and the patients energy envelope is expanding, and very firmly placed in the context of staying at all times within the energy envelope.

It goes on very clearly against any kind of goal setting, pushing to get fit etc. It's clearly saying wait for improvement first before you try to do more.

I take the phrase 'very gradual and flexible approach to expanding physical and cognitive activity' as a warning that when you feel you are improving and are itching to do more, to take increasing activity very gradually and flexibly, and not to push yourself or go outside your energy limits.

It's not saying people need to be encouraged to exercise, or are fearful of exercise, it's warning against returning to activity too quickly if you start to improve.
 
Andy said:
MEA Statement: NHS England Guidance on the Management of Post-Covid Fatigue Syndromes
https://meassociation.org.uk/2020/0...e-management-of-post-covid-fatigue-syndromes/
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I'm not entirely happy with:

"Crucially, the guidance fails to emphasise the importance of establishing a safe baseline of activity (which for some people means reducing activity levels) and then progressing with very gradual increases in physical and cognitive activity which take account of a person’s daily energy envelope during the crucial early stages. This is a process known as pacing..."

I'm worried about the reference to 'increases'.
 
I don't think we should be critical of this letter. There is a balancing act to perform. If you tell people to find a baseline and then not seek to increase activity in some ways you will be accused, perhaps not unreasonably, of encouraging exercise avoidance.
 
I think people naturally want to increase activity when they have a bit more energy and saying it should only be done very gradually over a long period of time - if there is some energy available and not continuing if symptoms worsen isn’t anything at all resembling a mechanistic PACE style increase on regular basis every week or so irrespective of symptoms.

eta. Perils of posting when you’ve not read all previous posts I see @Trish made this point a few posts ago.
 
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Barry said:
I agree with you @Invisible Woman.

Thinking about my wife, she has improved to some degree over the years, albeit long way from recovered. But that has come about that by taking the opposite strategy to what is suggested there, coming at it from the other direction.

She does not make conscious efforts to increase her activity incrementally; 'increasing' is not the guiding metric. She instead always strives within what she is capable of, wherever that limit may be at the time, and over the years I think that limit has increased a bit for her.

It's not about "progressing with very gradual increases in physical and cognitive activity", it's about living within and towards your limits as best as possible, and letting that limit guide you. It may increase for you, it may reduce for you, indeed it may well fluctuate for you. If you are lucky, then there will be an upward trend over time, but if so then the trend is a happy side effect of the strategy you are pursuing, not actively being driven by it.

If you seek to follow a programme of increasing exercise, that will likely fool you into not properly recognising the limits, and so push through those fragile limits and blow it all apart again.

To the naive it can sound like what I'm saying is the same as what the bold text above is saying, and some may well assert it is. But no, it is not. The bold text is predominantly open loop, with a bit of lip service to closed loop. Predominantly increase, increase, increase activity, with lip service qualifier saying to stay with the envelope limits - but the focus on increasing activity can undermine the necessary focus on limits and to be guided by them.

Closed loop is to recognise the limits and to use them as the guiding yardstick for what activity to do or to not do. To not even think about increasing activity, but just do whatever you can sensibly do in the moment. If those limits extend, then so will your activity as a natural follow on. It's all about the metric you focus on - should not be focusing on increasing activity, but focusing on working within your limit.

As I write this I can see how this runs so very counter to mainstream rehabilitation and will be alien to many who are familiar with and see it as a guiding light. But the whole point is that ME/CFS is far from mainstream.
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An excellent explanation. Better than from some supposed experts...
 
MeSci said:
I'm not entirely happy with:

"Crucially, the guidance fails to emphasise the importance of establishing a safe baseline of activity (which for some people means reducing activity levels) and then progressing with very gradual increases in physical and cognitive activity which take account of a person’s daily energy envelope during the crucial early stages. This is a process known as pacing..."

I'm worried about the reference to 'increases'.
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Yes, I do agree, because for some their limits may be closing in, and may continue to do so after any supposed baseline has been identified, no matter how much they may wish otherwise. Or maybe their limits simply will not increase, no matter what. In such cases people should not be led to feel they are at fault, or just odd.
 
Dismissive response from NHS England to concerns about graded exercise and Covid recovery
The response from Professor Stephen Powis at NHS England to the ME Association’s letter is very disappointing and dismissive of our concerns.

It fails to deal with any of the specific issues I raised about the totally inappropriate advice being given in relation to exercise (e.g. going on an exercise bike if you cannot go for a walk) in this new guidance.

It is incorrect to say that there is no link between post viral fatigue states and ME/CFS – most people with ME/CFS predate the onset of their illness to an acute infection from which they fail to recover.

We know from past history with SARS that it was followed by an ME/CFS illness in a significant proportion of cases.

And, while there is now a large amount of consistent and robust evidence relating to the harmful effects of graded exercise therapy (GET), this is not the case for pacing – which almost everyone with ME/CFS finds beneficial.
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https://meassociation.org.uk/2020/0...rns-about-graded-exercise-and-covid-recovery/
 
Moderator note
This post and several following have been moved from this thread:
NICE Statement about graded exercise therapy in the context of COVID-19
______________

MEAssociation have responded to NHS England's response about NICE's statement and the advice on the Your COVID Recovery website: https://meassociation.org.uk/2020/0...rns-about-graded-exercise-and-covid-recovery/
Powis quotes this from the YCR website [correction, it's NOT from the YCR website - but he said it was "reflected" by it, which it isn't!]:
Although some people who have had COVID-19 may experience post-viral fatigue, there does not appear to be an association with post-viral fatigue and diagnosis of chronic fatigue syndrome (CFS) or myalgia [sic] encephalomyelitis (ME). For those who do experience chronic fatigue, there is conflicting evidence regarding benefits or harm of pacing. Graded exercise therapy (GET) should be offered to those with mild or moderate CFS and only provided to those who choose these approaches.
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I'm going to do some digging into this quote and do a follow-up post...
 
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